Hair Cut and wig

  This is Kurt, who cut my hair last Wednesday.  Notice the smiley faces covering the mirror - I was not Brave Heart that day. Anton, Kurt's father, is fro Austria. It was he who taught Kurt about wig-making, and Anton looks right out of the Heidi movie; he didn't wear lederhosen, but you could easily picture him in them. And he still  had a beautiful accent.

Kurt and his father run Anton's Hair Company. Primarily, they do cranial prothesis' (wigs) for chemo patients. We had quite a talk the day he cut my hair. The history of how far we have come dealing with chemo and how a patient feels about him/herself affects the road to recovery is fascinating. My sister, who took me - I'd NEVER been able to do this alone - have totally admiration these two men for their commitment to people like me and Lori Sportelli. Two women came I to make appointments while we were there and at least another called.

And yet, Kurt worked into the night so we could get on the road as  early as possible Thursday and I would not have to wait for the mail to deliver me back my hair (and piece of my identity). Angels on earth these guys are!!

The CP is my safety net, and I know some people will need to see be wear it - but Mark and I are kind of liking the buzz cut. I now understand why so many guys do it. I never wear a hat around the house, although I never go out without one...yet.  I've about decided I may adopt a Camille Cosby, Sinead O'Connor look - big fat Alicia Keyes ethnic earrings, scarves, and buzz cut even when the chemo lets the hair grow back.

Maybe

Thank you again. I never grow tired of your comments, your texts, and all your prayers and karmic wishes are soo, so appreciated. Love to you all!

finishing up the first chemo

Michele had asked if she could be with me on the first chemo treatment and I jumped at the offer. It would be impossible foe me to describe this woman with any kind of accuracy; she is strong, big-hearted, generous, honest, ... get a writers dictionary and look for great character traits and it still probably wouldn't do her justice. She is one of the true blessings that came into my life because Chuck took a chance on me and gave me this job I have loved.

Michele picked me up at 8:45 for the 9:15 chemo appointment. We packed up her car and headed out. We got to the roundabout on Clearwater when I got a phone call that the appointment was being delayed until 11:00. Any of you who know me are probably glad you were not in that car at that point. But one of Dr. Lu's patients was put in the hospital and he needed to be with them before he saw me. With Michele's calming presence, I was able to see it really wasn't that big a deal for me, and it likely was for the other person.

So sweet Michele drove us around and we ended up taking a lovely walk in Columbia Park, which was spectacularly decked out in fall leaves. The river itself was smooth and beautiful. It was peaceful and calming.



We met with Dr. Lu for awhile and them went down and got all hooked up and the chemo started. It is a really efficient and not at all unpleasant. About that time my sweet friend Deb Fancher (also an extraordinary person with limitless cheer and heart) came by.

  Because I am bossy by nature, I asked them to turn some of your photos and sayings and quotes into a framed piece I can look at every day. They worked like happy children and it was balm to my soul... made me just relax.
Here is what they came up with. I hope many of you recognize pieces of your support here.



We have enough for almost another (that is a hint not to stop sending the inspirational sayings - they matter to me, I feed off of them!)

1st Chemo and it went amazingly well!

  This is me, obviously, in my chemo chair, which felt a little like a throne. I sat here for probably 5 hours today. It reclined and was actually pretty comfortable.

  This is the chemo machine. It pumped 5 anti-nausea drugs into my blood through the port and boy did they work well. I didn't have even the teeniest bit of nausea all day and even yet tonight!
Then it spent 4 hours pumping two cancer fighting drugs through the port into my bloodstream. The port work wonderfully and we are counting on those drugs to start shrinking that tumor today.  Martha Sandusky told me to think of the chemo as a "Cancer Killing Potion" so we are!

I had incredible company with me today and I will blog about that tomorrow. It was honestly a wonderful, wonderful day but I am starting to fade and think it is time to get in bed.

  But I didn't want to end with-out a big thank you to my friend Pete and his beautiful daughter McKenna. Aren't those terrific smiles? They brought us a fresh baked pasta dish, salad (I may have just gotten my vegetable quota in today!), Texas Toast, and Pumpkin cookies for dessert.
Thanks to them I am going to bed with a full stomach and an even fuller heart.

Chemo starts Wednesday!!

 This is my totally awesome husband and Laila, who did our chemo education today. she was sweet and very, very helpful.
Let me back up a bit:
Dr. Lu had talked with the Trios Tumor Board Tuesday, but there was no clear consensus about the treatment, so he contacted Dr. Aye, at Swedish, who took my case to the Seattle Cancer Care Alliance Tumor Board on Friday; that board consists of experts from Swedish, Virginia Mason, Fred Hutch, and U of W. Dr. Aye called me Friday night about 6:00 to explain what they decided, then he and Dr. Lu talked on Saturday, and Dr. Lu and Laila explained/clarified our new plan to us today.

I am going to do 2 rounds of 2 drug chemo. I will have a 4.5 hour infusion on Wednesday and then another in three weeks. At the end of the 6 week period I will have my CT&PET scans repeated. If the tumor has shrunk, I will go to Swedish to remove the left side of my lung. Radiation can make the surgery more risky, so we will do radiation on the center of my chest, where those 2 lymph nodes contained cancer, after the surgery. And probably another round of chemo, just to be sure.

One of the drugs is going to try and make me sick, which we cannot allow it to do that. I can't lose any more weight. The doc is giving me 3 drugs to fight nausea and I am going to have to "cowboy up", like Dave Phillips says, and develop some mental strength. and not let me head make me feel sick.

I also need to each at least 40 grams of protein a day, drink 2-3 liters of water, and get down at least 3 servings of fruits and vegetables. For the very first time in my life a doctor has said "Eat as much as you can, as many calories as you can manage". If you have a good protein shake recipe or a good nutrition bar you would recommend, please let me know. He and Laila said not to worry about how many carbs I take in because my body will use them up fighting the cancer! I so wish chocolate was a carb... sigh

The chemo education was interesting, so I may share more...I will be home from Wednesday through the weekend and probably only work part-time next week. If you have a question, don't hesitate to ask.

Thank you again for all your support. Mark and I are thrilled to finally be getting this started. We know what we need to do and we are going to do everything we can to make a good outcome. We are so very thankful for all that you have done on our behalf to help ensure that happens, too!

Implanting the port

I apologize for not having any pictures to share with you of this procedure. I debated about taking a photo of my chest with the port in it.... but decided to spare you all that. I am still orange from the antiseptic they swab you with.

I had surgery to implant my port yesterday. I am very grateful for this piece of medical technology. I have small veins that collapse, especially when I can't eat or drink before a procedure. Often nurses have a hard time finding one to put an IV in and that small thing becomes more painful than what follows.  For example, at Lourdes when they did the needle biopsy last month we had this funny, chatty, big hearted pre-op nurse who just could not get the IV in. I had tears, she had tears ... it was, in a way, very sweet that she was so compassionate.

This port will mean that we won't have to struggle with those things anymore! It sits right under my skin a couple of inches below the collarbone. It is not unsightly at all and does not hurt. The docs and nurses will access the port to give me the chemotherapy dose, add any other IV fluids as needed and they can also draw blood from it when they need to. Easy-peasy!

Also, Deb Fancher and Sue Ingraham told me about a patch that has helped them deal better with anesthesia, so I asked the lovely gentleman who was my anesthesiologist if I could try one yesterday. Wow!! What a difference. I woke up right when I should have, had no nausea or dizziness, ate several graham crackers and drank 2 apple juices, and went home less than 2 hours after the procedure.  Thank you ladies!! With your help we have conquered one more hardship and made the journey a little smoother. 

My first tatoos - getting ready for radiation

So, when Dusty was beginning college we used to joke about getting tattoos when he graduated; maybe something like a cool Chinese symbol. When I first took this job and was struggling to find my way Brenda, the best secretary in the world, and I used to say I should get some version of
"GH-PS" on my wrist. That stands for "Good heart - Positive spirit" and it would serve as a daily reminder to be nice - not the complete and total bitch I often felt like I was being.
Well today I finally got 2 tattoos....
 This is Moses, whose job it was to help me get ready for radiation therapy. He used this bean bag type pillow to make a body cast of my upper body as I laid in the CT scanner. It will harden and allow me to lay exactly the same way in the machine every time I go for therapy. Then he did a CT scan to pinpoint the tumor and see how it moves when I breathe. After that he tattooed dots on my sides that will make sure the radiation goes exactly where it should.
I will do 5 treatments a week of radiation therapy for 6 weeks. Beginning with a simulated run on Monday.

 This is Dr. Lawenda. He will be my Radiation Oncologist.
He believes in Integrative Care; paying careful attention to all areas of care; things like nutrition, managing stress and adding therapies like acupuncture if and when they are appropriate. Between the two of us I think Mark and I took 4 pages of notes during our talk with him. Very smart, very committed doctor.

Great news and an incredible man!!

Dr. Lu just called me 10 minutes ago and said the brain MRI was clean!! No metastisis, nothing to worry about!!
Thank you, thank you for all your prayers and good karma!

I feel like I am in such good hands with him; he took time out of a weekend, to call me personally and tell me because he knew it was making me anxious. Who does that anymore? Only an awesome, compassionate, incredible man.

When we hit our knees tonight, we will thank god for sending him here to be with us in this time and on this journey. We ask that you do like-wise. What a gift!! 

possible schedule

As you can imagine, Mark and I were a little thrown by the brain MRI. As a result, we think we wrote the schedule for next week correctly, but we will be calling Monday to make sure. Here is what we think is happening:
* Monday was supposed to be the MRI, but Dr. Lu got us in earlier, so that is a "Free Day".
* Tuesday he takes my case to Tumor Council. He and Dr. Aye are pretty sure of the course they want to take, but Dr. Lu says sometimes there is an idea, a thought from the multi-disciplinary team that can be helpful.
Also on Tuesday Mark and I will meet with the doctor that Dr. Lu recommends as our radiationist.
* Wednesday I get my port implanted. That is a simple in-and-out surgery.

Once they know the best strategy for shrinking that cancer blob as quickly as possible, I have to have a "Chemotherapy Education session", which we hope can be Thursday.

Dr. Lu hopes I will be able to have my first dose of either radiation or chemo on Monday the 17th or Tuesday the 18th.

And Friday we may go to Seattle to have my hair cut off. Lori Sportelli, bless her big, kind heart, shared a company that will cut your hair and make it into a wig. So you have your own color, your own hair and you don't have to figure that issue out.

I can't resist posting this: The MRI  got delayed yesterday after we were already checked in; there was an emergency; some poor person worse off than me by a long shot. We were getting restless watching another dissection of the Donald-Hillary debacle so a nice elderly volunteer showed me how to change the channel.

  I got to watch my Red Sox and since we were the only ones in the waiting room, we didn't even feel the need to be quiet!

one more hurdle

  So many of you know that I had an oncology appointment yesterday, where I thought we were going to learn the plan and the schedule for treatment.  We had a long talk with Dr. Lu, who is totally wonderful. He explained that he and Dr. Aye want to be very aggressive and shrink the tumor as much as they can as quickly as they can. To do that we are looking at a combination of chemo and radiation - as much as I can stand.
Before they start though, they need too be sure there is no cancer in my brain. I want to stress that both Mark and I wrote down that Dr. Lu said they have nor reason to believe there is cancer there, they just need to be sure.
This machine is an MRI. Holy smokes what an experience -- I hardly know how to describe it (although I do think it is miraculous science).  You lie down, have a cage placed over your head and neck to keep you still, and then are moved into the heart of the machine. Once the magnets start doing their thing to create the images the noises are incredible. If you have ever seen the Blue Man Group live - try to imagine them playing their weird discordant instruments on speed. It bongs, and beeps, and sounds like hammering wood, then hammering metal. It screams like a siren, and bloops like a hot pot at Yellowstone. And there is no predictability - no more rhythm to it than Emerson had playing the mixing bowl and Tupperware with the spoon last weekend.
The sweet pea tech put noise cancelling headphones on me and played country music, that I could catch snatches of now and then. I was told the MRI would last 40 minutes and what saved me and made it doable for me was math; I heard a country song lasts between 2:55 and 3:45, on average. So I counted the songs by fisting and moving my fingers out and then multiplying the number of fingers by the high and the low end of the song range. I was almost at the end of my ability to hold still, when I got to what I thought should have been 40 minutes. And I was only off by 1 song!!
I am not sure when we will know the results....

I will do one more post today with what we think is the schedule for next week. From the bottom of our hearts, Mark and I want you to know how much the e-mails and cards and other stuff means to us.  Right now you are as Lou Rawls used to sing, "The wind beneath our wings".

Depends on how you look at it

So, Dr. Aye called me today at noon with the pathology results from the 2 procedures I had done at Swedish. Poor man was on vacation and I felt bad for him.
One set of the lymph nodes did contain cancer.
The two in the center of my chest which I was hopeful would not. He says, quote "We likely got all of it during the mediastinoscopy". I am choosing to see that as a positive.

Dr. Aye's recommendation is to do 6 weeks or so of chemotherapy and then  surgery.

He made the pathology reports immediately available to Dr. Lu and I called his office to set that in motion 10 minutes after I hung up the phone from Dr. Aye. If things go well and the reports come through quickly, I can see Dr. Lu Friday at 10.

Dr. Aye said I need to keep up my fitness and my nutrition. If you ever want to take a bike ride with me, walk in the park, walk the fence line of your school during lunch, or have other ways you like to get and share exercise, please call or text me.

  I didn't have another picture today so I will finish with my Swedish caregivers: this was my prep nurse. He had a quiet and quite funny manner. Mark and I both were intrigued when he told me to take off all my clothes and put on the gown, bootees and "oh yes, I will give you the Swedish version of Victoria's Secret panty lingerie". I didn't take a picture... I will let you use your imagination.

Kiss your loved ones and count your blessings - we really are  surrounded by them, you know.
As always, I am so grateful for your prayers and the communications you send my way that buoy me up every single day!

Some of the best medicine!

  This is my 14.5 (see the math?) month old grandson, Emerson. We had an awesome day yesterday!  My son James and his lovely wife Christy brought Emerson down from Spokane to spend some time with grandma. He is beautiful and happy and so much fun to be around. Dusty came over, too, so the whole family was here. That in and of itself was beyond wonderful!! And good medicine.
This little man entertained us all, all day long (and wore us out). It took all 5 of us to keep up with him. He moved rocks, rode a little scooter we just bought (backwards seems to be more fun than forward), and had his first experience with our pop-up underground sprinklers (they caught him unawares as he was chasing a dog across the yard).
Emerson evidently didn't think much of my kitchen organization; he spent considerable time moving Tupperware, lids, bowls, paper plates and napkins, etc. from one place to another and being rather emphatic about us leaving things where he put them. If we moved anything back, he moved it to the new place again!

  Notice he has on a Johnny Cash shirt. His other grandma has bought him a small drum set with a bass, a snare, and a cymbal. When he found my metal mixing bowl he sat down on the rug and started beating on it! So we found a big wooden spoon and then added a medium snap-ware bowl to the mix. It was so entertaining! He pounded on the tops, turned them over, pounded on the rims, used the scoop of the spoon and then used the skinny part of the handle... that kind of exploring intelligence is what has always drawn me to teaching. Watching the wheels turn is so exciting! I was just mesmerized by his experimentation and purposefulness...

I woke up this morning with no nausea and very little anxiety. The love and attention of friends and family really, truly is the very best medicine! Thank you for the cards, the comments, the hugs, the prayers.