I hate technical difficulties. One of my main responsibilities at work is IT support for the company. I troubleshoot, set up computers, install software, and more. I also help friends with their computers as well. Therefore I hate it when I have technical difficulties.
Right now my laptop is in ICU at the local computer store. The preliminary diagnosis is that the plug where the power cord from the wall outlet plugs in has died. The laptop didn't recognize the AC adapter so I couldn't charge the battery, and if you moved it a tiny bit (or not at all), it would lose contact with the AC adapter and shut down. Not fun and basically made the computer unusable.
I will know in a couple of days if its an affordable, sensible, repair. The laptop is 3 years old so it doesn't make sense to spend a lot of money on it. And I really do not want buy a new computer right now. Nor is it backed up (which is a cardinal rule in the IT world).
In the meantime, I am using my phone and tablet for technology. Its okay but not great. Yes I can access the internet and my email but the on screen keyboard is a PITA. And all my files are on the laptop so I can't take care of some volunteer work. Nor do I have all computer programs that I use regularly.
But its not health related and it is aggravating. Grrrr.
Aug 21, 2017
Aug 14, 2017
And how am I doing?
I blogged about my difficult decision. I blogged about our new cats. I haven't blogged about me.
Honestly, I am not doing that great. I have been exhausted for a while. On vacation I would sleep a lot and was feeling caught up on sleep. Since coming home, I have been exhausted. After two nights in our bed, I have slept well but am still exhausted. I woke up a while ago and am still in bed and will probably go back to sleep.
My knee is a clear source of stress. It has a tendency to give way, even while wearing a brace, which is not fun. I start PT next week and will see how it goes. I plan to talk to the physical therapist about my knee giving way before I call my doctor back. Its not making me happy.
I am also feeling emotionally drained. It was a big effort to leave our long planned vacation. My first thought on driving home was to call my therapist and get in to see her. But I am not sure of my schedule this week and I have an appointment in a couple weeks anyway. Maybe I just need to go into emotional hiding for a bit and lick my wounds for a few days.
In some ways its a bit of relief that I stood my ground and left. Everything is now out in the open.
I need a nap. Bye.
Honestly, I am not doing that great. I have been exhausted for a while. On vacation I would sleep a lot and was feeling caught up on sleep. Since coming home, I have been exhausted. After two nights in our bed, I have slept well but am still exhausted. I woke up a while ago and am still in bed and will probably go back to sleep.
My knee is a clear source of stress. It has a tendency to give way, even while wearing a brace, which is not fun. I start PT next week and will see how it goes. I plan to talk to the physical therapist about my knee giving way before I call my doctor back. Its not making me happy.
I am also feeling emotionally drained. It was a big effort to leave our long planned vacation. My first thought on driving home was to call my therapist and get in to see her. But I am not sure of my schedule this week and I have an appointment in a couple weeks anyway. Maybe I just need to go into emotional hiding for a bit and lick my wounds for a few days.
In some ways its a bit of relief that I stood my ground and left. Everything is now out in the open.
I need a nap. Bye.
Aug 8, 2017
Port healing
Today I went to the Wound Healing Center at Swedish Hospital's Cherry Hill campus. I met a new doctor, Dr Myint and nurse Sally, who are caring, compassionate medical professionals. I know this because in addition to their warm personalities and ability to listen, Dr Myint complimented me on my "dream team" (his words) of other doctors. He knows them all: Dr Klein, my primary care doc; Dr G, my oncologist; and Dr Antezana, my dermatologist. He even knows Dr Flugstad, my orthopedist. I told Dr Myint and Sally they were now in excellent company as part of my team.
Sally removed the dressing that was applied last Friday and cleaned up the site. Both of them examined it and Sally took photos. Sally then measured the wound's depth while Dr M effectively distracted me in conversation. They tell me the wound appears to be healing nicely. Sally applied another dressing and I am scheduled to return for a dressing change again next week.
While they were all in the room with me (including a student nurse), I asked them to take a look at my scalp metastasis. This is the one which appeared to double in size during my first round of Ibrance, which Dr A biopsied and I have kept covered with his antibiotic gook. It got nicely pink in the last two weeks and appeared to be healing, but since the start of Ibrance round two, it's been oozing blood. Dr M of course recommended I talk with Dr G about it. He also opined that perhaps the oral antibiotics I've been taking may have had some positive effect. Sally then prepared a small dressing with medical-grade Manuka honey(!). What they use at the Swedish Wound Healing Center comes from New Zealand and is prepared in sterile environments. Although one can purchase Manuka honey for use in the home, as with any treatment, I believe in the involvement of your physician.
On my way out I stopped at the Ambulatory Infusion Center, where I received treatment for several years at the beginning of this dance with cancer. One of my favorite nurses was there and she did a significant double-take when she saw me. We hugged and decided to have a bigger personal reunion soon. It was so lovely to see her!
I have honey on my head, antibiotics in my system, a chance to reconnect with a friend and a port removal area packed with stuff. All appears well with my world!
Sally removed the dressing that was applied last Friday and cleaned up the site. Both of them examined it and Sally took photos. Sally then measured the wound's depth while Dr M effectively distracted me in conversation. They tell me the wound appears to be healing nicely. Sally applied another dressing and I am scheduled to return for a dressing change again next week.
While they were all in the room with me (including a student nurse), I asked them to take a look at my scalp metastasis. This is the one which appeared to double in size during my first round of Ibrance, which Dr A biopsied and I have kept covered with his antibiotic gook. It got nicely pink in the last two weeks and appeared to be healing, but since the start of Ibrance round two, it's been oozing blood. Dr M of course recommended I talk with Dr G about it. He also opined that perhaps the oral antibiotics I've been taking may have had some positive effect. Sally then prepared a small dressing with medical-grade Manuka honey(!). What they use at the Swedish Wound Healing Center comes from New Zealand and is prepared in sterile environments. Although one can purchase Manuka honey for use in the home, as with any treatment, I believe in the involvement of your physician.
On my way out I stopped at the Ambulatory Infusion Center, where I received treatment for several years at the beginning of this dance with cancer. One of my favorite nurses was there and she did a significant double-take when she saw me. We hugged and decided to have a bigger personal reunion soon. It was so lovely to see her!
I have honey on my head, antibiotics in my system, a chance to reconnect with a friend and a port removal area packed with stuff. All appears well with my world!
Aug 7, 2017
Scan results
The results of my scans from earlier this week are a mixed bag. The CT of my chest, abdomen and pelvis shows stable disease throughout. The brain MRI shows some progression and four tiny, new mets. I have only taken Ibrance for one cycle (one month).
Dr G decided it would be best to leave Ibrance and get me back onto a taxane. My cancer seems to respond the best to this type of chemo. I've had four separate experiences with Abraxane! He has prescribed Taxotere (docetaxel), related to Abraxane and also a derivative of the Pacific Northwest yew tree. It has similar side effects as Abraxane but is given once every 21 days.
How will I receive this infusion, you ask, if my port has been removed? On Monday the chemo nurses will insert a PICC line:
Dr G decided it would be best to leave Ibrance and get me back onto a taxane. My cancer seems to respond the best to this type of chemo. I've had four separate experiences with Abraxane! He has prescribed Taxotere (docetaxel), related to Abraxane and also a derivative of the Pacific Northwest yew tree. It has similar side effects as Abraxane but is given once every 21 days.
How will I receive this infusion, you ask, if my port has been removed? On Monday the chemo nurses will insert a PICC line:
A peripherally inserted central catheter (PICC or PIC line) is a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition).
After treatment they can remove the PICC line while my port site heals up and gets ready for a new port-a-cath. If it's not fully healed in three weeks, I can always have a new PICC line started.
Now onto a chemo-free weekend!
Jul 31, 2017
Major Taxotere side effects
On Friday the major Taxotere side effects hit me hard. I would have chalked it up to participating in the Gilda's Club fashion show and luncheon, since invariably something goes wrong for me that day, but the discomfort continues all weekend.
I had offered to speak in a short film about Gilda Radner and the impact her life continues to have 25 years after her death. This brought me to the Westin at (for me) they very early hour of 10 AM, dressed to the nines and prepared with memories and a quote from Gilda. The filmmaker asked me a few general questions, I shared my quote at her request, and she seemed pleased with my short interview.
The luncheon featured a photo booth where a (volunteer?) photographer took pictures of people in front of a cororate-sponsored backdrop. I got in line since I had dressed so well and here is the photo he took. (I made a copy with my iPhone.)
Back to Taxotere side effects.
FRIDAY
I went from the Westin straight to my oncologist's office, hobbling on both feet. Dr G and Nurse Jacque looked at me and said "hand-foot syndrome." Now why didn't I recognize that? Dr G told me to go home and start the henna again, since I believed it helped me last time this happened. He also prescribed a short, tapering course of steroids to reduce the swelling in my hands. For the pain in my mouth (mucositis? stomatitis? mouth sores, for the laypeople among us) he wrote a scrip for 25 mcg Fentanyl patches. The patch form delivers a steady dose of pain relief for 72 hours. He also gave me an Rx for more hydrocodone to relieve the break-through pain.
Next I called my naturopath for a recommendation on more ways to treat the mouth sores. Dr Bufi suggested gargling with baking soda mixed in water but not too strong. I should also have asked one of these docs for some Magic Mouthwash, but I could barely walk by then and wasn't about to go to yet a third (compounding) pharmacy.
At home I mixed up some henna, put on my pajamas, and slathered my feet with it. Even the cool sensation helped. Now my feet and hands are bright orange but the henna does seem to help.
My friend H came over and walked the dogs, helped me change the bed linens, and cooked us a lovely Shabbat dinner of Vietnamese spring rolls with fresh vegetables and fried tofu and homemade peanut sauce. After dinner she taught me how to get started on the iPad a friend gave me. We spent a lovely evening together and I was in bed by 10 PM.
SATURDAY
I woke up at the crack of dawn to feed the dogs. At least they bear with my stiff movements and are happy to go back to sleep with me after they eat. They're also willing to poop outdoors and saved me the discomfort of trying to walk them.
I started the steroids as instructed before breakfast and stayed in my jammies most of the day but at some point I couldn't stand myself. I took a shower and actually dressed and sat outside in the sunshine. Then I took each dog into the shower for a quick shampoo which they desperately needed. I Skyped with Rik's family to show off my clean, wet doggies, spoke with my mother and felt much improved by this point. However, I am still popping hydrocodone every 3-4 hours for breakthrough pain in my mouth and gargling with diluted baking soda every hour. It was hard to get a forkful of food into my mouth at dinnertime.
The rest of the day passed reading a new book by Michel Faber (not quite as good as I'd hoped for), eating leftover fesenjan with rice for dinner. and watching the second half of The Music Man. Robert Preston! I would have fallen in love with him to if he'd used the "think system" on me instead of Shirley Jones. And little Ronny Howard was only eight when he made this movie. Such talent evident at such a young age!
SUNDAY
I slept off and on (remember, taking steroids?), woke up early again with the dogs, fed 'em and went back to bed. Around 8 AM I got up, ate some yogurt, drank a mocha, and reapplied some henna to my left hand. Still haven't showered or dressed or walked the dogs but I see some of that in my future. Plus lunch out with a friend.
It's time to stop blogging and move on with my day. I do want to get out to see my friend. The sun is shining and I refuse to let cancer side effects make me a prisoner in my own home. But on Monday I'm going to have a serious talk with Dr G about how this is not the way to maintain quality of life.
And that Gilda quote I chose?
I had offered to speak in a short film about Gilda Radner and the impact her life continues to have 25 years after her death. This brought me to the Westin at (for me) they very early hour of 10 AM, dressed to the nines and prepared with memories and a quote from Gilda. The filmmaker asked me a few general questions, I shared my quote at her request, and she seemed pleased with my short interview.
The luncheon featured a photo booth where a (volunteer?) photographer took pictures of people in front of a cororate-sponsored backdrop. I got in line since I had dressed so well and here is the photo he took. (I made a copy with my iPhone.)
 |
| Karan Dannenberg, who dressed me for my first Gila's Club fashion show (which I never attended, due to a hospital stay), recognized me, as she always does, immediately said "Nicole Miller," (the dress's designer), and chatted me up for a few minutes. The shawl is courtesy my mother. |
Back to Taxotere side effects.
FRIDAY
I went from the Westin straight to my oncologist's office, hobbling on both feet. Dr G and Nurse Jacque looked at me and said "hand-foot syndrome." Now why didn't I recognize that? Dr G told me to go home and start the henna again, since I believed it helped me last time this happened. He also prescribed a short, tapering course of steroids to reduce the swelling in my hands. For the pain in my mouth (mucositis? stomatitis? mouth sores, for the laypeople among us) he wrote a scrip for 25 mcg Fentanyl patches. The patch form delivers a steady dose of pain relief for 72 hours. He also gave me an Rx for more hydrocodone to relieve the break-through pain.
Next I called my naturopath for a recommendation on more ways to treat the mouth sores. Dr Bufi suggested gargling with baking soda mixed in water but not too strong. I should also have asked one of these docs for some Magic Mouthwash, but I could barely walk by then and wasn't about to go to yet a third (compounding) pharmacy.
At home I mixed up some henna, put on my pajamas, and slathered my feet with it. Even the cool sensation helped. Now my feet and hands are bright orange but the henna does seem to help.
My friend H came over and walked the dogs, helped me change the bed linens, and cooked us a lovely Shabbat dinner of Vietnamese spring rolls with fresh vegetables and fried tofu and homemade peanut sauce. After dinner she taught me how to get started on the iPad a friend gave me. We spent a lovely evening together and I was in bed by 10 PM.
SATURDAY
I woke up at the crack of dawn to feed the dogs. At least they bear with my stiff movements and are happy to go back to sleep with me after they eat. They're also willing to poop outdoors and saved me the discomfort of trying to walk them.
I started the steroids as instructed before breakfast and stayed in my jammies most of the day but at some point I couldn't stand myself. I took a shower and actually dressed and sat outside in the sunshine. Then I took each dog into the shower for a quick shampoo which they desperately needed. I Skyped with Rik's family to show off my clean, wet doggies, spoke with my mother and felt much improved by this point. However, I am still popping hydrocodone every 3-4 hours for breakthrough pain in my mouth and gargling with diluted baking soda every hour. It was hard to get a forkful of food into my mouth at dinnertime.
The rest of the day passed reading a new book by Michel Faber (not quite as good as I'd hoped for), eating leftover fesenjan with rice for dinner. and watching the second half of The Music Man. Robert Preston! I would have fallen in love with him to if he'd used the "think system" on me instead of Shirley Jones. And little Ronny Howard was only eight when he made this movie. Such talent evident at such a young age!
SUNDAY
I slept off and on (remember, taking steroids?), woke up early again with the dogs, fed 'em and went back to bed. Around 8 AM I got up, ate some yogurt, drank a mocha, and reapplied some henna to my left hand. Still haven't showered or dressed or walked the dogs but I see some of that in my future. Plus lunch out with a friend.
It's time to stop blogging and move on with my day. I do want to get out to see my friend. The sun is shining and I refuse to let cancer side effects make me a prisoner in my own home. But on Monday I'm going to have a serious talk with Dr G about how this is not the way to maintain quality of life.
And that Gilda quote I chose?
"Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity."