Update to the update

(For the whole story of yesterday's doctor visit, see post " Peace & Comfort" below. Never a dull moment around here!)

Update: Nurse Karen called a few minutes ago and told me that she's been talking to my insurance people today. They told her that the approval for the IPI infusions are coming, but they wouldn't be done in time for tomorrow's scheduled appointment. So we've changed that first infusion date & time to Thursday, August 29, at 8:30 AM. 

Okay, changes have been made on the calendar...but always in pencil, just in case...

Peace & Comfort

Today was the moment of truth regarding the blood tests and getting accepted to the PD-1 study. All week I have tried my best to eat the healthy foods that were supposed to boost platelet levels - spinach salads with berries & almonds & mozzarella cheese & mandarin oranges & sesame seed oil, smoothies with spinach & berries & pineapple chunks & yogurt, eggs in all forms like mushroom omelets & scrambled with cheese & French toast with almond butter & honey. Janessa and I also went for half-hour walks every night, and I even set out this morning for a short walk before the appointment. And last night, Dean gave me a simple, heart-felt blessing for peace and comfort. So I walked into Dr. Grossmann's office just knowing that all would be well, no matter what.

When Dr. G and Darren and nurse Karen came into the exam room, I felt relief, even before they said a word. There was something about meeting with a "stranger" last week that multiplied my disappointment and discouragement. I'm sure Dr. K is a good doctor, but he hasn't been my advocate  and defender and director for the past 2 1/2 years. When Dr. G talks to me, I feel his hope and unending support for me and I trust him completely to tell me the truth, the whole truth, and nothing but the truth, with no sugar coating. So when he said, very simply and without beating around the bush, that I still did NOT qualify for the study, there was only the slightest twinge of regret - because he immediately started to outline what we were going to do next and why we were finished with the stress of trying to qualify. It was awesome. 

He explained that the platelet & white blood cell counts were still too low, and when (out of mere curiosity) I asked him what the exact number of platelets were, he pulled up a cool graph of my blood test results for the past 15 months on the computer (since right before the big Whipple surgery in May 2012). Just before the Whipple, the platelet & white blood cell counts were pretty normal, high peaks on the left side of the graph. Immediately following the surgery, the graph line dipped clear to the bottom in nearly every test! Following the line through the past 15 months, it never lifted more than a slight peak or two, but always stayed near the bottom of the graph. My platelet count last Monday was 97,000; on Tuesday, it was 89,000 (normal is 150,000-plus). Today's test was 93,000, so it had gone up a bit (spinach & walks around the neighborhood?), but Dr. G explained that it would never - never! - be normal again, because of my surgery and as long as I have this "chronic illness", cancer. There wasn't anything I could do to make them high enough and I wasn't doing anything wrong to make them so low. Why didn't anyone ever tell me that before? He also said that because my white blood cell counts are so low and will remain low, he did not feel comfortable going ahead with standard chemo. He said my marrow (which helps the blood counts) is very "quiet" right now, although my recent bone marrow biopsy results were normal. So, to help "wake it up", he had a Plan - of course!

Since I did have a pretty good response to IPI (ipiluminab - a less toxic chemotherapy) earlier this year, especially with the tumors in my liver, Dr. G wanted to do another cycle of IPI, but he wanted to combine it with radiation on the "walnut" and "kiwi" tumors I have. The combination of the two treatments should act like a "vaccine" - as my body and immune system recognizes the "dead tumor" cells that the radiation will create, the IPI should kick it up a notch (along with waking up the marrow) and be more effective on any other cancer cells in my body. I really can't believe I'm saying this, but I'm thrilled. It just makes sense and I have a great feeling of hope that it will work wonderfully. How soon can we start? Turns out I have an appointment for my first IPI infusion this coming Friday, August 23! Again, I can't believe I'm excited (maybe that's not the right word!) to have poisons pumped through my veins again, but it feels like this study business has taken way too much time and things need to start moving forward. Happily, I'll also be going back to the Utah Cancer Center and Dr. Avizonis (I've forgotten how to spell it!), who did the radiation on my neck way back in the beginning of my journey. Dr. G said it's good to go back to the doctor who first treated me & that he's in contact with Dr. A on a regular basis. I'm even more grateful (yes, that's a better way to describe it) to be starting this treatment on the tumors I can feel. "I can imagine they really bug you," Dr. G said. Yes. Yes, they do. A lot. I want to feel them shrink, right beneath my fingertips, the sooner the better. My first appointment for mapping and evaluation will be next Tuesday, August 27, and treatment should probably start the next week.

There was more good news from today's visit. Dr. G said my Albumen levels (part of the blood tests that measure nutrition) were great and he was proud of me for getting my nutrition up! He said to keep doing whatever I was doing because it was working. I'm sure that's also why my energy & strength has been better the past few weeks. I also signed consent to have some of my tumor tissue genetically tested for a trial that determines which drugs work the best with certain DNA. I don't have to do anything (but give the okay for testing) - everything else is done in the labs - and then they get back to Dr. G to give him my results, which may eventually lead to treatment specific to my DNA. It could also lead to the development of new drugs in the future. Pretty awesome. And speaking of drugs, Dr. G said that when PD-1 is approved by the FDA and put on the market in the next couple of years, I would have the opportunity to use it to fight my melanoma. I feel like I beat the odds by not getting into the trial and being randomized to standard chemotherapy.

To say the least, I came home today feeling 200% better than I did last week. I realized that what I was praying for, to qualify for the trial, was not the best thing for me; that once again, God knew what I truly needed. He knew what would be best, and that it was both radiation and IPI. He knew what would work and what wouldn't. He knew how anxious I was to see results, especially in the tumors that are the most worrisome right now. He just knows. He's my Father, He created me, and He's known me since before my birth. When will I learn to say, "Thy will be done," with the first prayers? It brings such peace and comfort to know that He has had a hand in every facet of today's visit and decisions. 

I will sleep better tonight.

(Picture: Mom, Troy, and I after lunch at the Blue Plate diner in SLC in May)

Disappointed

I am so disappointed right now that I don't want to talk or blog or sit upright.  I want to cry and crawl in my bed for about a week.  Those who have followed the last few posts know that today was the day I was supposed to slide into the study/trial program, have my first infusion (whichever arm it happened to be), and finally be receiving treatment for the tumors that are so obviously growing.  As you also know, the deadline of 28 days from scans had loomed before us & kept us hopping, until finally it was confirmed yesterday by Darren (the study coordinator) that too much time had lapsed--barely--and I would need to be re-scanned before we could go on within this time window.  This was at 4:00 in the afternoon yesterday, and he wanted me to be at Huntsman, ready for new scans, by 5:30.  Tears, frustration, and anxiety, but with Dean at the wheel during rush hour traffic, we made it.  I was re-scanned (thankfully the study people agreed to pay the costs) and was scheduled for another brain MRI today in between doctor visits and the impending infusion.  I received a sweet blessing from my bishop last night and felt peaceful going to bed.  Felt like everything was going to work out for the best...
Went to Huntsman this morning at 9:30 and while waiting to see Dr. Khong, Dr. G's nurse, Karen, came in and told me to go get the brain MRI and then come back for the Dr. appointment.  So, off we went to the lab to get my port accessed, and just as Tammy, the phlebotomist, is getting ready to flush the IV, she gets a message from Karen to do a CBC panel blood test.  Lindsey asked Tammy why, since I had had blood tests done the night before and was told we didn't need to do them again.  "Well, sometimes something doesn't look quite right and they want to re-check the numbers," she said.  That's when my stomach started rolling and the anxiety mounted.
Went in for the MRI, praying not just for my brain, but for my blood.  Please, please, let it be right for the study...
Back to the doctor appointment, where Dr. Khong went over the results from the scans.  Yes, things I can feel are growing.  No, nothing new is showing up.  Then comes the bad news.  My platelet numbers are low.  Normal platelet numbers are 150,000 & up.  Last night, my numbers were 97,000.  This morning, they were 89,000.  The study required a count of at least 100,000.  No exceptions.  My white blood cells are also low.  Those are a concern as well.  I am officially a "screen fail".
It hits me hard.  There will be no infusion today or tomorrow.  There will be no calling the study people to be randomized for either standard care or PD-1.
But, there is always a plan.  Always.  Now, I wait another week and have my blood re-tested.  If the numbers go up, we are a go.  If not, Dr. G will probably want to do some sort of tests to figure out why, even though the recent bone marrow aspiration was supposed to determine that and didn't show any problems.  What can I do to increase the numbers?  Dr. Khong says, nothing--don't suddenly change anything.  Don't take new meds.  There really isn't anything you should be eating or drinking.  No, it isn't the Warfarin (blood thinner) that's causing it.  But, laughingly, he says, Exercise might help.  Exercise always helps. Lindsey says we'll all keep our fingers crossed and pray, and nurse Karen says, "I'll light a candle for you...to the patron saint of platelets!"
I feel like a lead balloon.  All the hope is falling out of the bottom.  As we make the appointment for next Wednesday to see Dr. G and get the new blood tests, I almost lose it.  Darren is especially apologetic.  He sees my distress.  He gives Linds and I meal cards to go have lunch at the Bistro.  Yes, I'm hungry, but I can't eat much.  There's a lump in my throat (non-cancerous, thankfully).
Lindsey googles "how to increase blood platelets naturally" and there are a few easy things I can do, a few things I can eat.  But, who knows if they'll really help or not?  I'll do them because it can't hurt, but it doesn't feel like it will help either.  I am so disappointed...yeah, I already said that...
I'm dragging, but I'll feel better tomorrow.  I always do.  The news has to sink in so deep that it becomes part of me, and then I can move on and think about the next step.  But, it's hard.  I'm praying--always praying--and I know that whatever will be, will be.  Not much I can do about it now...except maybe a nice, long walk after dinner...
Happy 55th Anniversary to my mom and dad on August 15...  I love you more than words can say...

Next

I finally know part of what's coming next. Tuesday morning, August 13, I am seeing one of Dr. G's associates, Dr. Khong, for the final screening process and lab work for the study/trial. I don't know what to expect with the screening, whether it's a general questionnaire or measurements of the ancillary tumors or something I haven't even considered yet; as for the lab work, I'm assuming it will be a collection of many tubes of blood. But who cares, as long as my trusty port is operating well, as usual! I'm seeing this new doctor because Dr. G will be out of the office next week & in order to stay within the timeframe of the study, I needed to be seen before August 15. Darren, the study guru, will be at the appointment, too, so I'm not too concerned with this turn of events. When everything is said & done Tuesday morning, Darren will call the study people on the phone, relay the results, and immediately hear the outcome of the computerized randomization - which arm of the trial I'll be participating in. Whatever is chosen for me, I will receive my first treatment that afternoon about 1:00 (well, let's just say that I'll be in the Infusion Center at 1:00 - I'm sure there will be more waiting as the drug is specially mixed at the pharmacy & I'm prepared to receive it...) Still praying mightily that I get the PD-1 chemo for less side effects & greater results. After that, the frequency of treatments will depend on which drug I get - standard chemo will be every 3 weeks and the PD-1 will be every 2 weeks, always on a Tuesday. Not sure how long a cycle is & when they scan to see how things are working, but I'm sure that's one of the questions to ask on Tuesday.

I have mixed feelings about it all, of course. Top priority is that things will finally start moving forward & the fight against the beast will begin. Worried about what it will take to keep up the fight. But one sliver of hope the last few weeks has been that my strength has increased - my balance is better, I have more good-feeling days than bad, I don't get as tired, I'm able to work a little longer & more often, I went to the temple & felt close to normal... It's those little things that make me rally and believe that  I'm being lifted up by Higher Powers. I've been down before, but I've bounced back... And I can do it again! Thinking happy thoughts, praying heart-felt prayers, singing & smiling, loving my babies (tiny and not-so-tiny), and expressing thanks. It's a good life.