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She’s Back!

“We haven’t met, but I remember you.  I know all about your case.  We discussed you often among the interdisciplinary team.   You never made it to me last time… I believe there was a sticky insurance problem… but now you are here!”

The appointment with Dr. R went well yesterday, all things considered. His office is part of OHSU, but in the new section at the bottom of the hill.  I hadn’t been there yet.  And neither had my scans, evidently.  OHSU has not yet received my scans from the SCCA.  And my scans from Florida, unfortunately are on their way back there for spring break…You see,  I reluctantly gave my copies to their records department in Seattle expecting to have them returned directly to me.  After the four discs had been uploaded into their system, they promptly shipped them to me, all right – to me at my old Florida address that is.  We are now waiting for them to make the round trip via a change of address order.  Washington has copies, of course and we are also waiting for them to arrived from there. 

All things hinge on the reading of the scans.  Dr. R won’t take anyone else’s word for anything.  He doesn’t want to read someone else’s measurements - He wants to take them for himself.  I like that in a doctor.  He is a funny guy. Young looking, although he is probably my age.  Easy going, but informative.  He rattled off a bunch of experimental drug names that have no letters… like 6453272  and 57738982 blah blah blah.  I don’t know how he remembers which is which. 

But what did he say?

• He said he needs the scans.
• He said he has access to trial chemo therapies.
• He said I need to decide whether I want more treatment or not.

I said I want more treatment.  He asked why.

“I have four kids, three of which are sitting out there in the lobby coloring pictures.  I am 42 years old.  I want whatever tricky thing you have to give me.”

“Ok then.  I need the scans.”

There is a concern about my right femur.  Dr ER (from SCCA) called us and emailed Dr R about a lesion on the top of my right leg near the hip.  During the weekly team meeting up there, someone one pointed out that I may be in risk for a fracture.  Since Dr R did not have access to the scans yet, he ordered x-rays of both hips and a visit to my old friend, Dr. H - the Wizard of OHS that removed the tumor from my tush last fall.   Evidently, a fracture at this point would set my treatment back a long time, time that I might not be able to afford.

Dr. R wanted me to take a reality pill.  “You are not a statistic, but the statistics are not in your favor.”  I know.  As he was talking I was picturing my Aunt Shirley.  Thirty years ago, if you remember, she was told to find homes for her children.  They all have homes of their own now.  I come from sturdy stock.  And I am not in charge anyway. 

After wasting three hours across town at the new IKEA store (whoo hoo what a place!)  we went up the big hill to OHSU at the top of the city.  It was good to see Dr. H again.  He showed us the x-ray.  He saw what the other team was concerned about, but I couldn’t see it. It was like looking at the sonogram picture of a week old embryo.  “Yah, he looks just like his… a… father…??”   I don’t know how they do it.    Dr H didn’t think that the risk of fracture was worth the pain of making sure it didn’t happen. He could see the weakened area, but said that there was no holes in the face of the bone yet. If we wanted to be [overly] cautious,  we could shore it up now. He would have to go in and remove the affected bone, cover it with a plate and screw it in place.  There could be no chemo for a couple months. ”Why don’t I just be careful?”  “Yah, good idea.  And we will take a look at it every two or three months.”  “Good idea.”  “Now, would you mind if I had a look at your ah…?”   “Finally someone is interested in my butt!  In Florida, every time I turned around I was begging people to look at my butt and no one really cared enough.”  “Well welcome back! We’ll look at your butt every chance we get.”  And he did.  And he said it looked great!  haha  He said it healed up nicely.  Wha’da’ya’know.

It was early evening when we made it back to the house.  An hour for resting and then Dan and I started to get ready for our date!  It was our 20th Wedding anniversary and Kelli and Tim gave us a gift card for The Cheesecake Factory!  It was nice to go out as a couple and pretend for a little while that you are as normal as the next guy.  I tried not to think about the sickness inside me.  That’s just it: I don’t feel sick.  I see very sick people all around me, but I don’t feel like I am a part of that.   I get tired and achy, but I spent so many years with the pain and fatigue of Fibromyalgia that it doesn’t phase me as it might someone with no history.    In fact, as I sit here writing this, I fall asleep for a minute or two and wake to continue writing.  haha   It just takes me longer to get things done. (I have been writing this all day - in between school with the kids, getting laundry done, and paperwork with Dan.  Oh and napping.) 

So, things are normal - Hurry up and wait.   Just a normal condition when your condition isn’t normal.  Please keep praying for us, but don’t worry overly much.  I know my tone is reserved today,  it’s been a long month… I am just a bit tired.  What I need is a couple days of rest followed by something fun. 

Something fun. . .yah, that’s what we all need. Something fun.

Yes, we are in Portland at Kelli and Tim’s house. The hotel bills were eating a hole in our pocket and we needed a moment to step back and breathe.

Things are still up in the air.

And by “up in the air” I mean “up to the Lord.”

I have been looking online for a place to land and catching up with the laundry. Dan has spent the day on the phone making appointments and talking to old contacts for work.

And speaking of phone calls, we talked with Dr. ER on the phone this morning. She had the results of the CT and Bone Scan. . . It wasn’t the conversation that I wanted.

There are no new knots in my lungs, however four of the old ones had a growth spurt of sorts. A centimeter here and a third of one there. It doesn’t sound like much, but it was growth. The good news is that there is still no lymph nodes involved and no fluid where it shouldn’t be. Nothing seen in my liver…as was noted in my files (but not told to me…) The bone scan did show metastatic disease — progressing from the scan in November– in my skull and spine.

“rut-ro-raggie”

“The four spots that got larger… are they the only thing there? How many others are there now?”

“I don’t know that. I have not seen the actual scans yet. I’m reading off the report. This afternoon I will go to radiology and look at them with the doctor over there and I will get an exact count. It doesn’t say anything about other nodes.”

“So what do we do now?”

“I would recommend that we do more chemo. You’re maxed out on the Doxorubicin. The risk to your heart is too high. But as long as you are tolerating the Ifosfamide, we should do another round of that with something else added in. I will be presenting you to the team meeting on Monday. I will also get with the pathologist then. He has been going over your slides.”

“I would love to get a better diagnosis than ‘Poorly Differentiated.’ It would be nice to know exactly what kind of sarcoma I have.”

“Sometimes it’s just not possible to know where it originated. They were able to see ‘round cells’ so that might help.”

“What about surgery? Couldn’t we go in microscopically and take those four big ones out?”

“If we can get the metastatic disease under control again and shrink them all with more chemo, then, yes, we can go in and remove them surgically.”

“Do you have surgeons that can do that there? Or would that be better done at OHSU?”

Yes, we have sarcoma surgeons here, but there are also expert surgeons at OHSU. Have you decided where you are going to live yet?”

Hmmp. The question of the century.

“Not really. We are in Portland now.”

“You are?”

“The hotels were eating us up.”

“I would suggest that you make an appointment with Dr. R at OHSU. He and I work together on cases like yours. We send patients to him and he sends patients to us. He can do all the same chemo that we can do up here and there are clinical trials for sarcoma at OHSU that we don’t have here. I can send him an email and get you in there.”

“I was very comfortable with you and the reputation of the SCCA . . . It’s not that I wouldn’t want to stay there with you…”

“If you were my sister . . . Or myself. . . I would say embed yourself in Portland where you have family and get in with Dr. R.”

“You know that my surgeon is Dr. H. — he is partnered with Dr. R. in the sarcoma program here. I tried to get in his practice before, but the University turn me down because I had no insurance. But now that it spread and I have disability, it would just be a matter of transferring my case from Florida to Oregon (instead of Washington). I guess I should do that.”

“I will send him the email before the end of the day. Let me know what you decide to do. I would still get the PET scan done next week.”

I hung up. And I was still. Very still.

“God is still in control.” I reminded myself out loud. I looked over at Dan and his face looked a lot like mine. His eyes were as red as mine. “Yes, He is.”

I don’t understand exactly what is going on. I am stunned.

But I am still believing in God’s plan for me. Everything is going to work out.

“And we know that all things work together for good to those who love God, to those who are the called according to His purpose.” Romans 8:28 (New King James Version)

As far as a place to live. . . There is a perfect situation that COULD be the solution. We just have to convince the landlords to believe in the perfection of it as well. I won’t go into it now, but please pray that this certain couple’s heart be softened towards us and our housing problem would be solved.

It’s Friday night. We have so much to accomplish this next week. But the offices of the people we need are now closed for the weekend. In the mean time, we are still searching the classifieds for a place to live. (It‘s cheaper here.) We’re also searching for a charger to replace the one left in a hotel room that goes to the cell phone we bought in Seattle. (That was a mouthful.)

And we’re searching for a break. Lol

You can only laugh. Crying is too hard on the attitude.

Looks like we only got part of God’s plan right. . .

We have never had such a hard time finding a place to live. Once, when the kids were babies, we packed everything we owned and moved from Wyoming to Oregon without ever having even visiting the state before. We rolled into Portland with all our belongings in a rented truck and within a day had a beautiful house to move into. No so with this move, I hate to report. We have been all over the Puget Sound and every door we knocked on has been a wrong number. Every organization that pledged to help has backed out. Dan and I looked at each other with wide eyes.

Meanwhile, the visit with the new doctors at the Seattle Cancer Care Alliance (SCCA) went well. Dan and I were both impressed with the amount of information we were given. More than any other place we have been. Looking at the scans from February (the CT taken after the 4^th round of chemo), the team of three –the radiologist, my new sarcoma specialist, Dr. ER, and the fellow who we will call Dr. Ponytail –were encourage at how well I responded to the chemo. They told us that only 25-30% of sarcomas actually shrink with chemotherapy. From November to February, there was not only shrinkage, but some actually disappeared. There was one node that looked like it may have been bigger, but it could have been swelling, she said. We have yet to see what round number five and six accomplished. In fact as I am writing this, we are in a hotel room waiting to see if the scans will be done today or not. Dr. ER has ordered a PET scan, a CT scan and a bone scan — all full body. The bone scan is to rule out the actual presence of bone mets. “We didn’t see any evidence of bone metastatic disease. The spots that were seen before could just be from arthritis.” hmmp

I have to tell you a funny part of the visit with the doctors . . .

Before Dr. ER came in, we met with the fellow (the doctor studying to be a specialist in sarcoma oncology), Dr. Ponytail. He gets his nickname from the fact that he sports one of those messy ponytails that you see on the cover of romance novels. The ponytail was accompanied by a strong Brazilian accent. The ponytail and the accent was attached to a very tall, dark and handsome body of a young doctor. He is a very good and thorough physician. He told us he had spent the previous hour and a half going over my file. He then listened as we told him from the beginning my story. He asked and answered questions in detail. Then it was time for him to make a physical exam. He turned to Dan (the Man) and said, “You may stay or you may go out while I do this exam. It is ok with me either way as long as it’s ok with your wife. I am going to step out for a minute to check on something, I will be right back.”

“Do you want to go check on the kids while he examines me, Dan?”

“And leave you alone with HIM? No way!”

“Oh, my goodness! I can’t believe you.”

“Well. . . Ah . . . He is not supposed to be alone with a female patient is he? There is no nurse here…”

“Yah. Right.” Hehehe

So, Dan stayed. Later, when it came time for Dr. ER — a woman btw– to do her own exam, Dan promptly and without a thought excused himself to go check on the kids. Later at the hotel, I called him on his green streak. He denigned it, of course, with a grin. I have to admit it felt good to have my husband think that I still had a chance with a tall Brazilian doctor- even with the scars and the bald head.

The entire meeting took almost three hours. What will happen from here will depend on the outcome of the scans. We just received a call that the first of the scans will be in 30 minutes. (And the PET scan not until next week.) So, we have to pack and run. I will continue the story after– on the way back to Portland.

Oh, yeah, we are going back to Portland. . .

Hello World.

I am sitting in the library at Seattle Cancer Care Alliance, using their computer (without spell check btw) to let you know that everything is fine. We haven’t found a place to live yet, but we met with someone who is going to help us with that task. Until then we are driving a borrowed car and sleeping in borrowed beds - living a borrowed life. For the moment. We are listening very closely for a whisper from the Lord as to the direction we are to go from here, lest we screw up and follow our own lane down the highway and end up walking around the desert with our tribe for the next fourty years like Moses and the Israelites. (It was only an eleven day walk from Egypt to the Promised Land, you see.)

My brother Joe carted our ten check-in suitcases, five carry-on bags, three backpacks, one laptop, and a briefcase — and the five of us to the airport and kissed us goodbye. Then it was up to us to get the above mentioned tribe through the airport and on to one plane after the next without too much ado. The security check line was fun — “Take off your shoes.” “Why?” “Because I said so.” “WHY?” “Because HE Said so! Hurry!” I did get brownie points for putting our toiletries in five different quart sized baggies. “This woman did this exactly right!” The attendant said as he held my tooth brush and deoderant high overhead for all to see. Once on and off the first flight from Fort Myers to Houston, there wasn’t a moment to spare before the next leg headed for Portland. We literally ran from one plane into the next. The kids liked the take-off, but had a hard time with the ear-popping landing. Kelli and Tim, and Denny and Leenie were there at the end of the journey to hug our necks and cart our luggage to the monster truck Tim brought to take us to Kelli’s house.

That was Tuesday. On Wednesday we rested. No, not all day. We had to get a rent-a-car and make some phone calls. (My first appointment with the new doctor is next Wednesday) A couple of our shipped boxes arrived. (There are six boxes coming via media mail, one parcel post, and twenty-two coming by FedEx. I have never moved like this before!) That night we all went to Denny and Leenie’s for dinner. When I walked in the door, Denny’s eleven year old daughter, Callen, hugged me so tight — like she had never hugged me before! I don’t think she thought she would ever see me again. The boys, Keenan and Forest gave me a smile I won’t forget. Before I was just Aunt Teresa. Always just there. Now I am Aunt Teresa, come home to them. How’bout’dat.

Yesterday (Thursday) we repacked our carry-on bags for cooler weather and headed up the road towards our new life. We drove and drove and checked out the suburbs and sub-suburbs. It wasn’t until late last night that we found a hotel cheep enough for the night. This morning we came here to the new Cancer center to drop off paperwork and pick up paperwork and meet with the Social Worker that has been so very helpful. I was so nervous to come here to another new place. But so far I have only met with angels in disguise. God is always watching out for me. I know that He has a plan and I know that He knows where we will live. I know that He has it all worked out. I just wish that He would give an advanced copy of the itnerary.

I don’t know when I will have internet again. Please be patient. (No more nasty emails begging for information! This is my real life, not a soap opera! {kiss kiss} I got several! hehe) I am so tired. Soon though, I will be able to match the slow pace of the Pacific Northwest and sit with my coffee on my porch swing and look out over the waters of the Puget Sound.

Won’t that be nice . . .

Your thinking about it aren’t you? Sounds great, huh? Well, Come on! We’ll leave the light on for ya. . . As soon as we get a light, that is.

There, your caught up. I will be back as soon as I can. Or maybe as soon as I want to. . .gotta love me, it’s a rule!

Love Ya
t

Just a quick note to say that all is fine, but I am too busy to sit down and write a big thing this week.  The sale has come and gone and we are living in an empty house for a few days.  Empty except for the boxes that we are shipping back and a few items here and there that need to get in said boxes.   We are boxing up the remnants of the sale and still have a few items to sell…   And cleaning the house…  Trying to find enough suitcases for everyone.

 You get the picture.

We will be staying with my mother the first part of the weekend (On dial-up drats lol) and Sunday and Monday night, we have a hotel on the beach!  A two night stay was a Christmas gift we never had a chance to use — until now!   We Fly out on Tuesday Night and will be staying at Kelli’s in Portland while we find a place in the Seattle Metro area. 

Once we get back to the West Coast, we will have to spin in the opposite direction to get resettled.  I will keep track of everything and get you the whole story as I can.  When we leave the house on Friday, we will be technically nomadic again until we find the house God has planned for us, in the neighborhood He picked out, down the street from Church we have been assigned to next.   I can’t imagine how He can find a church to replace the one we have had here.  Boy do I have a story to tell you …  but no time today, so sorry.  lol  (Don’t you hate that?) 

My Love to all!  I will catch you up soon and get back into writing daily maybe even? 

Keep praying for us, please! 

teresa