But the closest thing possible. I've just well enough to stay home and not be admitted to the hospital, where of course I could pick up all sorts of bugs no matter how clean everything they keep it.
So I continue to honk, cough, and blow incredible amounts of snot out of my nose. I'm on the second antibiotic, this one especially for pneumonia, and I do feel some better already.
Thank God for A, H, and R, who have been walking the dogs while Rik was away. I am taking two of them out for lunch now and the third has a tbd date. And thanks to all those who gave me rides, brought food, and came to visit during these past few weeks of chemo recovery and what turned out to be not quite pneumonia. You know who you are and I bow at your feet. And will always, as science fiction author Robert A Heinlein originally taught us, pay it forward.
Onward to lunch - or in my case, brunch. And COFFEE!
Jul 3, 2017
Jun 26, 2017
Yes it is pneumonia
Nothing more to add except that the antibiotics seem to be working. I've stopped coughing and blowing my nose. I just have very little energy. If I do one medical appointment it takes me a day to recover.
Other than that life is peachy, if you like sitting around in your pajamas all day long recovering from the previous day's strenous three hour activity (including showering, eating and being a passenger In a car).
Snarky, but just a little.
Jun 19, 2017
Healing
I'm pleased I felt healthy enough to travel to Washington DC at the invitation of Susan G. Komen © for a breast cancer bloggers summit this past weekend.
On Tuesday I saw The Amazing & Wonderful Nurse Jacque, who gave me a Neulasta shot so that my white blood cell count would rise and make me fit for airplane travel. Ever since the news story broke about the cancer patient who Alaska Airlines asked to deboard a plane, Dr G has recommended his patients carry a letter confirming his medical opinion that they may travel. I carried the letter, wore a mask (to prevent catching something from another passenger), and showed the letter to every flight attendant. No one gave me any trouble. I flew Alaska Air.
The GelClair arrived at the hotel before I did -- a full case of it. I really only needed one box for the duration of my trip, but didn't realize I'd receive the entire order at one time. I put off worrying about to pack it to bring home.
The combination of Orajel and GelClair has helped tremendously. I still have about 10-12 mouth sores, and found it difficult and painful to chew over the weekend, but I did eat. And somehow managed to gain five pounds.
I spent too many hours in shoes that weren't supportive enough, developed blisters and swollen feet. My feet actually swelled so much that I traveled home in my UGG bedroom slippers, the only things that felt comfortable. I haven't had this experience before while traveling and wasn't prepared with compression socks.
When I saw The Amazing & Wonderful Nurse Jacque today to have her change my PICC line dressing, she looked at my feet and recommended I start wearing the compression socks until my feet return to normal size. Fortunately I have several pair left over from previous hospital stays. I've been in them all day and I can already see an improvement. I also plan to sleep again with my feet elevated.
My hand-foot syndrome has begun to recover. The skin is peeling from my left thumb. Did you ever pick at scabs when you were a child? I have that same irresistible urge to pick at the dead skin and cut it away. The henna did help.
I changed my fentanyl patch while away and reduced from 100 mcg to 75 mcg. I'll be sure to report this when I see Dr G on Wednesday. Maybe he will have me reduce it again. Or not yet.
My mouth tastes funny all the time and food doesn't taste right either. This feels like a new side effect to me, although I know many people go through it. I just don't remember going through this before.
And I should receive some news on next chemo steps on Wednesday. Hopefully not Taxotere. That one dose and its ridiculously painful side effects is plenty, thank you.
More soon on the Komen © blogger summit later.
On Tuesday I saw The Amazing & Wonderful Nurse Jacque, who gave me a Neulasta shot so that my white blood cell count would rise and make me fit for airplane travel. Ever since the news story broke about the cancer patient who Alaska Airlines asked to deboard a plane, Dr G has recommended his patients carry a letter confirming his medical opinion that they may travel. I carried the letter, wore a mask (to prevent catching something from another passenger), and showed the letter to every flight attendant. No one gave me any trouble. I flew Alaska Air.
The GelClair arrived at the hotel before I did -- a full case of it. I really only needed one box for the duration of my trip, but didn't realize I'd receive the entire order at one time. I put off worrying about to pack it to bring home.
The combination of Orajel and GelClair has helped tremendously. I still have about 10-12 mouth sores, and found it difficult and painful to chew over the weekend, but I did eat. And somehow managed to gain five pounds.
I spent too many hours in shoes that weren't supportive enough, developed blisters and swollen feet. My feet actually swelled so much that I traveled home in my UGG bedroom slippers, the only things that felt comfortable. I haven't had this experience before while traveling and wasn't prepared with compression socks.
When I saw The Amazing & Wonderful Nurse Jacque today to have her change my PICC line dressing, she looked at my feet and recommended I start wearing the compression socks until my feet return to normal size. Fortunately I have several pair left over from previous hospital stays. I've been in them all day and I can already see an improvement. I also plan to sleep again with my feet elevated.
My hand-foot syndrome has begun to recover. The skin is peeling from my left thumb. Did you ever pick at scabs when you were a child? I have that same irresistible urge to pick at the dead skin and cut it away. The henna did help.
I changed my fentanyl patch while away and reduced from 100 mcg to 75 mcg. I'll be sure to report this when I see Dr G on Wednesday. Maybe he will have me reduce it again. Or not yet.
My mouth tastes funny all the time and food doesn't taste right either. This feels like a new side effect to me, although I know many people go through it. I just don't remember going through this before.
And I should receive some news on next chemo steps on Wednesday. Hopefully not Taxotere. That one dose and its ridiculously painful side effects is plenty, thank you.
More soon on the Komen © blogger summit later.
Jun 12, 2017
Komen
Maybe you remember Komen invited me to a breast cancer blogger summit in February. I went to DC in March while experiencing the throes of Taxtotere side effects. Since then I've had one round of Abraxane, which should have been fine but wasn't. I've also had pneumonia for several weeks. So I'm finally getting around to blogging about my Komen experience.
I am changing my mind about Komen.
The summit began with introductions. There were eight or nine bloggers, not all of whom have actually had breast cancer but all have had some contact with it. Two of us with mets, one with triple negative disease, at least one in early stage treatment and one whose mother and father had both had breast cancer. Half white women, half African-American women. Komen marketing staff and several presenters.
Komen would like to "increase support" for
1) those living with metastatic disease
2) those in underserved populations such as poor, people of color, triple neg, etc.
3) involving more young researchers in working on breast cancer
Those are three powerful statements for Komen, especially numbers 1 and 3.
Sadly, no one really knows what number one means. A researcher who presented said that he didn't believe people with mets would benefit from more research into stage IV disease than from research into all kinds of breast cancer. This from a man who treats patients with mets! When pressed, he said that wasn't what he meant. But I heard him say it and I wish I'd recorded him. Komen has work to do in this area. We with mets just want to live our lives, and that means research into our disease. We must press this point. Loudly.
The example of a project in Chicago serving poor women showed a photo of an open sewer in a clinic where mammograms take place. Youd have thought it was a third world country, not the USA. So goal 2 is well in hand.
Goals 1 and 3 match well, if younger docs want to study mets and keep women alive longer. Either way, breast cancer needs more and newer researchers.
Yes, we met Nancy Brinker, now head of Komen global. Had dinner with the new CEO Dr. Judith Salerno. And we participated in the DC Race for the Cure.
Now to the last and least expected point. After the Race we were debriefing. Someone said she wasn't a blogger, hadn't been invited to the whole summit (but was sitting with us now, so someone invited her to join us in this most private part of our talks). She said something like, why are you so concerned about mets? What about poor women, women of color and their needs? To which I answered in some astonishment, I didn't set the agenda, Komen did. And I think it's great for Komen to give women with mets a place at the table. And I don't play mine is bigger than yours.
That was my Komen experience. I don't know who this woman was, and I don't want to name the researcher who seemed to think it was okay to develop new drugs to treat his patients but not me and thousands like me.
But the head of marketing took me out to dinner when in Seattle, and invited Dr G to join us, and included her new staff, the ED of Puget Sound Komen and another mets blogger flown here to appear in a PSA. R listened carefully, took notes, and I think we metsters do now have a place at the very large Komen table if we can sit there with open minds and without grudges. That's the biggest change I've seen in breast cancer in my 16 years from early stage to today.
I am changing my mind about Komen.
The summit began with introductions. There were eight or nine bloggers, not all of whom have actually had breast cancer but all have had some contact with it. Two of us with mets, one with triple negative disease, at least one in early stage treatment and one whose mother and father had both had breast cancer. Half white women, half African-American women. Komen marketing staff and several presenters.
Komen would like to "increase support" for
1) those living with metastatic disease
2) those in underserved populations such as poor, people of color, triple neg, etc.
3) involving more young researchers in working on breast cancer
Those are three powerful statements for Komen, especially numbers 1 and 3.
Sadly, no one really knows what number one means. A researcher who presented said that he didn't believe people with mets would benefit from more research into stage IV disease than from research into all kinds of breast cancer. This from a man who treats patients with mets! When pressed, he said that wasn't what he meant. But I heard him say it and I wish I'd recorded him. Komen has work to do in this area. We with mets just want to live our lives, and that means research into our disease. We must press this point. Loudly.
The example of a project in Chicago serving poor women showed a photo of an open sewer in a clinic where mammograms take place. Youd have thought it was a third world country, not the USA. So goal 2 is well in hand.
Goals 1 and 3 match well, if younger docs want to study mets and keep women alive longer. Either way, breast cancer needs more and newer researchers.
Yes, we met Nancy Brinker, now head of Komen global. Had dinner with the new CEO Dr. Judith Salerno. And we participated in the DC Race for the Cure.
Now to the last and least expected point. After the Race we were debriefing. Someone said she wasn't a blogger, hadn't been invited to the whole summit (but was sitting with us now, so someone invited her to join us in this most private part of our talks). She said something like, why are you so concerned about mets? What about poor women, women of color and their needs? To which I answered in some astonishment, I didn't set the agenda, Komen did. And I think it's great for Komen to give women with mets a place at the table. And I don't play mine is bigger than yours.
That was my Komen experience. I don't know who this woman was, and I don't want to name the researcher who seemed to think it was okay to develop new drugs to treat his patients but not me and thousands like me.
But the head of marketing took me out to dinner when in Seattle, and invited Dr G to join us, and included her new staff, the ED of Puget Sound Komen and another mets blogger flown here to appear in a PSA. R listened carefully, took notes, and I think we metsters do now have a place at the very large Komen table if we can sit there with open minds and without grudges. That's the biggest change I've seen in breast cancer in my 16 years from early stage to today.
Jun 6, 2017
Almost better
I felt so well today that I actually got out of bed at a reasonable 10 AM, showered, ate and dressed, and sat on the deck reading. I didn't take a nap, although I thought about it. I even went on a walk around the corner with Rik and the dogs. That 's the biggest sign of improvement from pneumonia.
On the cancer front, I am losing two fingernails for the first time in almost 16 years of cancer. There are healthy nails growing underneath, so I am not too worried. I get my strong nails from my mother. (Dad gave me the thin hair and the long legs.)
No more news for now.
On the cancer front, I am losing two fingernails for the first time in almost 16 years of cancer. There are healthy nails growing underneath, so I am not too worried. I get my strong nails from my mother. (Dad gave me the thin hair and the long legs.)
No more news for now.