It always surprises me to see just how variable Lori’s health can be. Last week she was struggling to breath. This week she is talking a mile a minute (as is her normal) and yesterday it was without oxygen. Her lungs have improved a lot – but she is still very tired and has limited energy. This last bout of progression and allergic reaction has sapped away a lot of her muscle mass, so she is working on regaining some of her strength.
On Monday, she even walked around the park (with the help of oxygen). Walking and getting her body moving almost always make her feel better – however, it requires decent air quality.
After some scheduling issues, she is starting radiation this morning. In theory, she will be doing 10 sessions of radiation, but it is unclear how that will work with her chemo, as the delay has meant that her last radiation sessions would overlap or be too close to her next chemo. We will wait and see. She will get the rest of her radiation schedule today.
I want to highlight how her schedule changes constantly. Even if we have a planned schedule, her health is tentative and can cause a change at any time. I must admit that her doing radiation scares me. However, it is the best approach to help deal with her pain levels, and there is some hope that it will help reduce the size of her worst lung tumor.
For those who wish to visit or help, please take a quick read of the spoon theory. She has limited energy so doubling up on things really helps – that is a visit in combination with a drive or a delivery. I’ve put together a calendar indicating when she needs help – https://sunshineandbutterfliesblog.wordpress.com/helpers-calendar/. I will say help needed on the days she is wanting drivers or food delivered. Please wait for a confirmation before dropping by. This changes daily.
Please feel free to volunteer by contacting me, and I will pass along a volunteer list to Lori. She has many volunteers, so keeping it all straight is something that I am helping her with here. Lori and/or Mark will be the ones that make the final decision as to who will drive and visit. Lori has so many friends, she wants to see and visit with many people, so having different drivers allows for that. Just be aware that things can change.
Thank you everyone – Lori is definitely feeling the love of you all.
It was a big day for Lori. This was the first non-doctor’s appointment outing since she had the negative reactions to Gemzar. She has made an incredible transformation – the phoenix is arising again. On Thursday last week she tired easily and lost her breath talking or walking between rooms in her condo. By Saturday she was talking at her normal rate without losing her breath and was well enough that I felt comfortable leaving her in the condo alone – not something I would have done on Thursday.
Monday (yesterday) was a big day. You’ll note that Lori is still on oxygen. She still tires easily and is walking slowly – but she was well enough that we could whisk he away and bring her over to visit with Becky in Capitola, and make a short walk along the beach where we could sit, chat, watch a seal pop up now and then, and generally enjoy the sounds and smells of the ocean.
We, Lori, Dawn and I, had a great visit with Becky who lives in Capitola. It was nice to get out of San Jose for an afternoon. Air quality here isn’t that great right now – and that especially problematic for Lori.
For now she is healing and hoping that navelbine slows the progression of her cancer. Her next chemo option is taxotere which is loaded with horrible side effects.
Right now she is living one day at a time, and yesterday was a good day.
It has been a very eventful week for Lori. She had an allergic reaction to Gemzar, which involved a severe rash and fluid in the lung. As Lori is wont to do, she refused to go to ER. She saw the dermatologist, who freaked out and called the ambulance to bring her to ER – (note that she was at the Stanford main campus cancer center, to ER is just around the corner. She convinced Mark to get her out of there and go strait to pulmonology – So, they had an adventure involving changing wheelchairs so they could evade the paramedics, and taking the passageway route through Stanford Cancer Center to the main hospital and then up to pulmonology. Once there, Lori refused to leave until the doctor saw her – which eventually happened. They drained 1/2 a litre of fluid from her lung, which eased her breathing a bit.
Given the reaction, she will no longer be taking Gemzar. She is scheduled for a new infusion on today (Friday) of Navelbine. She will do two infusions and then will go for radiation – so her radiation which was planned for this week has been pushed to September 1st.
I visited Lori yesterday. She still gets out of breath easily. She has a fentanyl patch that is controlling most of her pain. She is also on prednisone to bring down the inflammation related to the allergic reaction. One of the biggest challenges is that she cannot tell when something is the cancer progressing versus a reaction to the chemo. She currently is not comfortable without oxygen (she panics without it). She is on 2 or 3 litres depending on how she is feeling – but hoping to get back to 2 litres once the inflammation goes down.
These last few weeks have been hell on her – she is tired.
At this time she has lots of support. She has limited energy for texting and reading online messages. One way you can show your love for her is to send a postcard or letter. That way she can read it when she has the energy, and her texting is limited to the essentials needed to ensure she is getting the care she needs. If you wish to send along a gift, then a Whole Foods gift card would be something the family can use.
If you need her address, leave me a comment and I’ll email it to you.
Lori is still struggling with the tumor in her lung – which is making breathing difficult, which in turn makes everything else difficult. She has had two infusions of Gemzar. The chemo makes her nauseous, but the treatment for the nausea makes her depressed – which also doesn’t help. She is on a new side effect treatment regime and new medication to manage pain – which makes her tired (just hoping it is managing the pain).
There are some signs that the chemo is helping with the bone mets (the ones clearly visible on her skull appear smaller), but we are not yet sure if it is helping her lungs – which at the moment is where the chemo is needed the most.
At this time, Lori’s husband tells me they have enough food and are not in need of meals. In addition, they are asking that at this time visits be restricted to family and close friends. Feel free to share your love here – Lori will see the messages when she is up for it. Texts can be a little overwhelming if she gets too many, so better to email or comment here.
Lori’s test results showed progression – which she expected given her symptoms. On Friday she saw her oncologist and they decided she needed to get on the chemo right away and not wait even another day. So, she started Gemzar on Friday.
For Lori, Gemzar is a 2 hour infusion that is given once a week. She is also expecting to be doing radiation the week after next (week of August 26).
So far the biggest side effect she is feeling is nausea, and that has been control with medications.
She is mostly feeling terrible and trying to let her body heal. For the next couple of weeks she is only seeing family and close friends. She welcomes messages via the blog and email – please do not expect personal replies, but know that she is reading them and feeling all the love you are sharing.
At the moment Lori is in a lot of pain as a result of progression in her bone mets. She had an emergency appointment with her radiation oncologist and will be doing radiation sometime next week on mets in her skull, spine, and hip.
On a side note, I noted on Monday (when we spent the afternoon and evening in the ER) that not only could you see her mets on her left temple, but they resembled that of a klingon (sorry, the Sci Fi geek in me is showing).
Unfortunately the growing skull mets are causing headaches. However, the ‘good’ news is that they are not brain mets.
So, in addition to doing Gemzar for the first time on Saturday, she’ll be doing radiation. She is also on oxygen 24/7. This bout of treatment is going to be HELL for her. Please send your love and prayers.
Her husband is managing (or at least was). He is working on a schedule of 24/7 pain management, as well as coordinating people who are caring for Lori and trying to find time to go to work.
Lori is currently feeling rather miserable. She is using oxygen at home. After discussions with her oncologist, Lori will be switching chemo. Lori is pretty certain (given symptoms and such) that her current PARP inhibitor isn’t working – also, because of the brain TIA or whatever it was issue, there is concern with her staying on the PARP inhibitor.
Lori is scheduled for scans this week, and to start a new chemo regime – Gemzar on Saturday.
Send prayers and well wishes.
Hugs to everyone,