So as of this moment Mom is still at the hospital, but she will go home tonight. This morning we had a very successful meeting with Dr. Pietanza. Ben, Mom, Clancy and I were all in the room.
Here are some words from Ben about this morning:
"It’s the in-between time that’s the hardest,” Janet said this morning as we waited for Dr. Pietanza to arrive. With last evening’s good news more fully digested the morning meeting felt less ominous – especially after a bowl of cream of wheat with banana, four whole slices of bacon and a hot cup of tea. Breakfast was followed by a hot shower (with Sarah’s loving assistance) and back into a clean bed. A good start to the day for certain.
The echo of Dr. Pietanza’s heels purposefully hitting the floor announced her arrival before she poked her head around the curtain. I think we all (Janet, Clancy, Sarah and Ben) held our breath as the long-awaited meeting got under way.
“Amazing” – there is simply no other word to describe Pietanza. She sat down on the bed and immediately took Janet’s hand and asked how she was feeling…. “Better,” was the answer offered up with a sense of certain, renewed energy.
A brief exchange was followed by a general overview: The cancer is now in the lining of the brain and there is a strong sense this is the cause of the nausea rather than post-chemo impact. Obviously, dealing with the brain spots and their effects is the first priority. In order to do that, the next step is a series of radiation treatments (10 doses over a period of about 2 weeks). This radiation precedes round two of chemo. This radiation will be ‘whole brain’ radiation which will deal not only with the three identified spots but also any other cancer cells that may be active in the brain lining (we liked this sentiment).
Knowing there were sheets of paper dripping with questions, Dr. P. decided to let the onslaught commence rather than continuing her monologue. And so we all began with our questions and she followed with the answers she had…
What’s the risk of radiation on the brain? Not much more risk than with the previous neck radiation she had on C2/C3 of the spine. Fatigue is likely and that varies by patient. There is limited risk of cognitive impairment but that is not likely and not a concern of Dr. P.
Her breathing is easier thanks to the nebulizer treatments. Is that something that can be continued at home? Yes (hooray!)… She will be sent home with a pipe-like treatment that will break-down the mucus and allow her wind passage to remain more comfortably open.
Why don’t we do chemo and radiation simultaneously? The combination would be too toxic. Chemo is more of a systemic treatment while the radiation is more ‘local’ in nature. Radiation allows the treatment of specific areas that need more immediate focus (i.e. the brain lining).
How fast is the cancer moving? Why were the brain spots not noticed before now? Are they new? This is hard to answer. The February MRI – not done by Sloan – may or may not have shown the spots. What we know is that the Tuesday MRI (done at Sloan) showed them and the nausea is further evidence of their presence so we’re going to deal with them immediately. We also know that per the last aggregate reading that the cancer is ‘stable’ meaning that it’s grown in some areas and recessed in others so no net increase. And, we know from the bronchoscopy that there is no further tumor encroachment so that’s good.
What has been the experience of other patients who have gotten whole brain radiation therapy? Again it varies but generally the cancer is immediately responsive. Fatigue will be the most negative side-effect and that varies by patient.
When we get to the second round of chemo is that typically better or worse than the first? The second round is typically better because we both have insights on how the patient reacts based on the first round and the body is more ready for the chemo based on the first experience. These things combined often means a better experience. The key is to communicate what Janet is experiencing so they can address those reactions. Dr. Pietanza stressed she felt the communications to date had been good and appropriate and that Janet should continue conveying exactly how she’s feeling so they can mitigate what they can.
How long between the end of radiation and the start of chemo? Dr. P and Janet decided that a one week break between the 10 doses of radiation and round two of chemo felt like the right amount of time based on the last go around (where they only allowed her body a break of 5 days).
Why radiation for the brain spots vs. chemo? Often times chemo does not go to the brain (especially the lining). This got a bit technical and scary… The lining can block out a lot of crap – kind of seems like its key job… The chemo will not have the necessary immediate impact on the brain spots that are needed right now. Radiation is a more locally focused treatment that will target and certainly impact those spots.
As this all progresses will we have the benefit of knowing when we’re near the end? Yes, we will.
We’re not at that point? NO, we are NOT at that point!
“And, those who do best have a fighting spirit, which Janet has,” Dr. Pietanza. And so, the much anticipated meeting came to a close with a solid plan of attack in place. Dr. Pietanza gave Janet a huge hug and Janet told her, “I feel so solid with you. I feel like I’m in the best possible hands…”
The radiation team will do their brain mapping today so the first radiation treatment can be given and forward progress can resume. And, Janet will return home this evening (pending that mapping). She’s breathing easier, she’s more hopeful, and she’s ready for the radiation treatment.
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Okay hi it's Sarah again.
So the update since then. I just got off the phone with Clancy, who's been with Mom at the hospital all day. She walked one-half loop today around the 14th floor hallway, and part of that unassisted, thankyouverymuch. Clancy said her coughing was much less frequent today, except for occasions when she was "laughing too hard." Heh go Janet! Dr. Houseman, who is her new radiation oncologist, met with her to discuss the brain mapping, radiation plan, etc. Because there are three spots in her brain, they are doing a "general" radiation. As Ben mentioned, this is a good thing because it will knock out any little new ones that could be growing. General is a misleading word though, because, as Clancy described it, they are very calculated and careful when it comes to radiation to the brain, so much so that a physicist is employed to determine the exact method, area, etc.
Once the mapping is complete, Mom will go home at last. She has some new meds to help her along, and Clancy created a new chart so we can keep track. Mom said today: "It's a new world but we have excellent teachers." I'd say that definitely sums up our experience with the medical team at Sloan - they're amazing, just amazing.
If you're planning on visiting Mom at home in the coming days, please call before you come, just to be sure that she's okay for visitors. We are doing our best to help her avoid exhaustion, but the love and support is greatly appreciated and serves as serious meat and drink for the Mama. Thanks all.
