Busy Babysitting

Well, Susie and I thought we were babysitting for Kai while Becca and Brian had a much needed R&R in Seattle. But we have ended up taking care of Dash also for periods of time to help out Jon while he takes care of Lori who is quite sick with the flu. We are having a great time with both of them.

Wonderful Day with Old Friends

My college friends and I spent a wonderful day together today. We saw the doctor (all my tests are in the normal range!!!!!), toured the cancer ward, went to lunch at a French Bakery, walked around in the clear, crisp cold, and talked and talked and talked. It was like we had just walked out of the dorm 45 years ago.

Snowy Day...sort of

Woke up this morning to beautiful big snow flakes. It snowed off and on all day but nothing stuck. My college buddies, Susie and Karen, arrived safely and we spend the day catching up and enjoying each other's company. Milestone tonight...I ate a regular meal of salmon and pasta. My first real meal in 10 days! Am feeling stronger with each day. Hopefully tomorrow won't be too cold to get out for a walk around the block. Thanks to all of you for your cards, and phone and email messages.

Another Day Stronger!

Had a busy day with visits from my sister, Lori and Dash, lots of phone calls and multiple naps. Am feeling much stronger today. If we don't get snow tomorrow, I hope to get out for a short walk in some fresh air.

Home, at last!

Just enough energy for a quick post to say I am home at Becca's. Feeling tired and rocky but grateful to be home. I am so grateful to my kids (to add additional stress Brian's Mom ended up in the hospital this morning!!! They definitely need to trade in their mother-in-laws!)

You can now reach me on my cell phone,

Still in the hospital....

Mom's digestive and metabolic/electrolyte issues still haven't resolved to her or her physicians' satisfaction so she is still here at the hospital for at least another day. Mom is okay with that (not devastated by the news). In her current situation she firmly believes it's the best place for her to be.

We've changed the communication plan. If you'd like to get in touch with her please call her cell phone (541-760-1392) and leave a message if she doesn't answer. Please do not call the room phone. Emails are the best, though it takes longer for her to get them as one of us is usually reading them to her.

And the process goes on.... :-)

Slight change of plans

Well...mostly good news with a twist.

Mom is doing tons better today...she showered (HEAVEN!), she's starting to eat real food again, she's back to being lucid most of the time.

However...the digestive issues are not resolving themselves to the staff's satisfaction and both for dehydration issues, and just as much, in consideration of the burden that would put on a home healthcare situation, they want to keep her here where they are staffed to take care of it and can monitor her better and experiment with a couple of new medicine options.

Mom's in good spirits though. She sees herself returning to herself again and is alert and with it enough to start watching movies or listening to books on tape again.

Becca

Another gorgeous sunset!

Well...it's been an 'interesting' 48 hours....

Mom had improved enough for them to give her the Friday 7 am dose and that's when the wheels came off. Along with the same digestive and dehydration issues, all the known neurotoxicity symptoms came roaring in. Mom spent the next 36 hours pretty confused and disoriented, with hallucinations and anxiety. Not a fun place to be for someone as on top of things as she usually is. Phyllis, Jon and I made sure someone was always with her and we doubled up a lot of the time.

Due to her mentation state the doctors chose to keep her overnight again. As the person whose house she would be staying at (and with a scary set of stairs to negotiate) I was all in favor of that.

Since 1 or 2 this afternoon she has been becoming increasingly lucid, though there are still definite moments of la-la land and confusion.

I believe unless she takes an unforseen turn she'll be discharged at some point tomorrow (Sunday) and will be staying with us until she's back on her feet and can head home.

If you want to send her cards or anything (either for this post-cycle period or future ones) our address is:

Becca Davis

6021 SE 20th Ave

Portland OR 97202.

So Mom ended up with 9 of 14 doses in the end. Very respectable given the extreme impact it has on all the body's systems. It will be interesting to see how cycle two goes as the majority of people receive signifcantly fewer doses because the side effects come in much sooner.

One positive of the afternoon/evening. Another beautiful sunset and another nurse who hopped right on it when Phyllis came running in the room and said "Molly has to see this!". So Mom got to enjoy the beautiful moment and another physician in the room with an iphone took the pic above and sent it to her....

Friday morning update

More ups and downs:

the ups: it was actually sunny yesterday in PDX and there was evidently a nice sunset on view from the 7th floor. Mom's friend Phyllis mentioned that it would be great to get Mom in a wheelchair and over to the lounge where she could see it. Mom's awesome nurse Michael got right on it and she was able to soak in the view. (Phyl said the colors didn't come out in the cell phone pic she sent)

the downs: the docs still weren't satisfied with the labs enough to give mom her 11 pm dose, which was very discouraging for her. they did give her the 7 am dose but they're very hesitant to give her much more. she MIGHT get the 3 pm today and then she's done. (If she does, she'd make it to her goal of 10 doses....).

Evidently she took an Ambien last night to try and help her sleep and it has hit her much harder than usual (not surprising given all she's been through) so this morning the report is she's very groggy with slurred speech. Hopefully after sleeping it off she's be back to her normal feeling-awful self. :-)

Temporary Break

In today's good news/bad news update:

Mom had a really, really rough time Wed night with the digestive and blood pressure side effects taking center stage. As a result by the morning her electrolytes were really out of whack and her blood pressure had fallen to as low as 85/42 (the major/common impact that IL-2 has).

Based on that the docs decided to hold off on her 7 am dose to give her body a little time to recover. Over the next 8 hours her vital signs came bouncing back (she was back up to 115 or so over 70 or so) and she started feeling a little better and more alert etc. When they reran her labs at 2 they decided that though the vitals were back fine, they still weren't totally happy with her sodium or other electrolyte levels and decided to hold the 3 pm dose too. By the time I left at 4:30 Mom had perked up a bunch (it's a amazing how quickly you start to show some recovery without the IL-2 in your system).

Our hope is that the 9 pm labs will look good enough that she will receive her 11 pm dose and go back to feeling lousy again tomorrow.

Current metrics: Received 8 of 10 doses. Her goal/hope is to end up with 10 of 14. Wish her luck.

Only 24 more hours of treatment to go. Then they'll watch her for 12 hours or so and then start thinking of releasing her to our house to recover before she goes home with friends to Corvallis.

Then two weeks later it's back for a second cycle. And unfortunately it sounds like on cycle 2 you pretty much jump into it with Wed/Thus-level symptoms.

This break was good for her today. Hopefully she can have one more day of attacking these tumors before celebrating the end of Cycle 1.

Wish her luck!

B

Day 3 Update: Halfway home.

Mom has been able to take 7 of 7 treatments (of a potential 14) so far which is great news. The 3 pm dose was a bit in doubt due to her low sodium levels but those stabilized enough in the morning for her to be able to receive it. They’ll check her electrolytes again at 9 to see if she’s able to take the 11 pm treatment. Also her blood pressure, though falling quite a bit, is still staying in a doable range which is also a victory.

Many of the rest of the side effects are hitting with a vengeance however, and medication isn’t quite able to keep them under control. It’s amazing how each appears just like predicted…

Actually, the fact that the staff is so knowledgeable about them and educated us on them so thoroughly at the beginning and are right on top of them managing them is a great comfort and gives us a lot of confidence. We really can’t say enough about the nurses and other caregivers here. They’re attentive and empathetic and totally on the ball when it comes to managing the course of IL-2 treatment. We’re very thankful that Mom ended up in a center with this much experience in the area.

In many hospitals she’d have to be in CCU/ICU with all of the visitor restrictions and sterile gowns etc that come with it. Instead she is able to be in her own (wood-paneled, lovely-green painted, well-lit) room, with friends and family in attendance at all times (and who themselves are set up nicely in an alcove in the room or in the family lounge and sleeping rooms on the floor) in her own pajamas. It just makes one feel much more human (or as human as one can feel chained to a bed suffering a super flu complete with digestive issues and plunging blood pressure) J

Hopefully Mom is able to take the 11 pm does and has a better night than last night. Then only 2 days to go!

Becca

Hanging in there...

Becca here with a report from Day 2. Mom is hanging in there. The really bad symptoms haven’t shown up yet (and the nausea that reared its head has been brought back under control with medication and the first set of chills taken care of with warm blankets) but she is already completely exhausted from being woken every two hours (at the most) for vital signs to be checked or medication to be given. As the nurses warned us when we arrived, a week without a successful sleep cycle is enough to turn anybody into a zombie.

Furthermore like all IL-2 patients here she is under “bed arrest”…kept in an alarmed bed and only allowed up with supervision and escort. She did manage to convince them to give her a few brief moments of freedom this morning when she was feeling better to get out of the room and sit in the lounge with Brian and Kai (though a trainee nurse was there the whole time too). I’m sure the chance to get a different view and and soak in all that light helped, though a two year old doesn’t exactly help with the tiredness.

The wi-fi connection in the room is on the fritz, so Mom might be delayed in seeing any emails or messages you’ve sent, but keep them coming; she appreciates the support. I'd say at this point she's pretty much past being up to seeing visitors or talking to them on the phone.

We'll keep you posted...

All set up

It has been a long day. After getting the line put it, I had to wait around until my first treatment at 3 pm. That went week but the line entrance in my throat really hurts and I am having a hard time finding a comfortable position. I am locked into my bed with an alarm and am only allowed to get up in the company of a nurse. It is going to be a long week...

Feeling tired and a little nauseous but don't know whether it is the IL-2 or taking the antibiotic Keflex on an empty stomach

Becca set up this wonderful healing altar for me. Very peaceful. Jon, Lori and Dash will be over for a short visit and then I am going to try and find a comfortable position and get some sleep.

Happy Valentine's Day

I am all checked in at the Hospital. Have my room all arranged and the line in my juguler vein. Now i just wait until 3 pm for my first dose.

I am in room 706 of the Providence Portland Medical Center and my phone number is 503-215-8706. Someone will be screening the calls but if I am up to it I could love to chat for a minute or two.

Have my valentine PJs on to liven up the day

Miss you Red

My wonderful Red died a year ago tomorrow and I miss him terribly. He would have known just the right things to tell me or just when to give me a hug to help me get through this treatment. He was such a amazing example of how to approach pain and death with love and dignity.

Radiation over, on to IL-2

I got through the radiation yesterday. Lots of discomfort and some pain in my back and arms and I am not certain whether it is from the radiation itself or the terribly uncomfortable position I had to keep my arms in over my head for the half hour they were scanning and then treating.

Tomorrow, I am heading up to Portland. One of my friends suggested having a healing circle the day before I head into the hospital each time. So if everyone would take a moment at 5 pm tomorrow Sunday and imagine standing in a circle holding my hand with my family and sending me healing thoughts and courage to face what lies ahead. That would be wonderful.

Positive vist with the Radiation Oncologist

Two very positive things happen today to brighten my outlook tremendously. First on the drive to and from Portland, I listened to tapes (from 10 years ago) of Bernie Segal reading from and talking about the ideas in his book "Love, Medicine, and Miracles". I am so glad I did as it just reinforced that all of the things that I am doing on this journey is what he describes as an exceptional patient.

It also made me realize that in spite of my prognosis, the universe has aligned to put me in the right place with the right people at the right time. My appointment with the radiation oncologist is just one example. I don't have the space to give his whole story, but suffice it to say that this man had a vision of combining immunotherapy and radiation therapy that most of his colleagues thought was crazy (and still don't believe his results). Because he moved over to Providence Cancer Center when it was built, he was given a chance to pursue his research. He has just finished a stage I study with 12 patients (also 10 additional) and has had amazing results enhancing the effectiveness of IL-2 therapy. I don't fit his protocol, but he was willing to take me on and try it. At the least, it will give me some relief from the pressure of the growing tumors. At the most, it will allow this therapy to work much more effectively. Even those patients who had the radiation, but did not respond to or had to quit the IL-2 are alive two years later. Also, I would not have been recommended to Dr Seung if I had not been referred to Dr. Lufkin for the BRAF study.

Also, how many doctors enter the room, sit down like they don't have another patient all day and ask you to tell them about yourself..what you do, what are your hobbies, what is your support system...and finally what is your cancer story. Dr. Seung spent over 45 minutes with me and then managed to work me into his very busy treatment schedule.

I also had a wonderful evening with Dash last night, playing and reading. Dash loves poetry. Anyone have a good recommendation for a poetry book for children that isn't the common rhyming poetry?

Overwhelmed

Well, the weight of what I am facing came crashing down around me last night. It is during those times that I greatly miss Stefan and Red. One feels so alone and it is very hard not to feel panic and to have scenarios spinning out of control. A hug or word of encouragement is so needed at those moments. Sophie can give me a lick or tail wag but it is not the same.

Righted myself this morning after a long walk with Sophie and lunch with SueAnn. She is such an amazing friend who knows when to listen and just the right things to say to put me back in the right mental perspective.

Tomorrow I head up to Portland and meet with the radiation oncologist early on Tuesday. Don't know whether I will be getting one dose of radiation or a series. I hope to be back in Corvallis on Wednesday or Thursday to give me time to get organized for next week.

We have a plan!!

After two exhausting days of tests and doctors' visits, we have put together, in my opinion, a very optimistic treatment plan.

The scans showed some new subcutaneous tumors and growth in the existing tumors. I knew that the tumor near my spine is larger as it is now pressing on my spinal column and causing a lot of pain. BUT the good news is that there are no tumors in my brain or vital organs...a good time according to my oncologist to attack this disease before it gets into my organs.

I will first have radiation to the tumor near my spine and the tumor on my hip. There was a small trial at my hospital which showed that radiation to the tumors right before IL-2 improved the effectiveness of the IL-2 therapy.

Then on Monday the 14th, I enter Providence Hospital Cancer Center, to begin IL-2 therapy. This center is the second largest IL-2 treatment center in the country and they have a higher success rate than other programs with this therapy. This could be because the nurses are very experienced (they have been doing this since 1997) and the facility is new with large private, homey rooms where they do the treatment instead of in the hospital ICU. They encourage you to bring your own things..clothes, pillow, blanket etc. All very positive in the mental healing department. I will be in the hospital for 6 to 7 days, spend 3 days with Becca and then be home for the rest of the two weeks between cycles. The second cycle will begin on March 7th.

Becca, I or the person staying with me will try to make daily updates to the blog so that you all can keep track of how I am doing. I am not sure that I will be up to visitors or calls but would love cards and emails (they have WiFi in the rooms). Of course, keep sending those prayers and healing thoughts my way.