Port and Iron

Last Tuesday night, I was surprised to get a message on my phone from Nurse Karen that Dr. Grossmann was arranging for me to have a port implanted through Same Day Surgery and that Dr. Scaife (yes, the same surgeon who did my notorious/wonderful Whipple) would be performing the surgery.  I was surprised because we hadn't really talked about it in all the appointments the past couple of weeks, but obviously Dr. G (and everyone else in Clinic 2D) was well aware of my poor, struggling veins.  We HAD talked about the fact that my blood was very low in iron and that I would have to have some infusions, so I'm sure this is what prompted Dr. G to place the order now, before those infusions began.  It was just another jolt to my already shaky world, I guess.  It has taken some time and explanation and validation from more than one cancer patient/survivor that having a port is a good thing, especially when someone like me is getting more useless pokes than useful ones.  I'm getting what is called a Power Port, which can be used for lab work, infusions, AND for scans.  Yes, a good thing.

So, today, Friday, I've talked to four different people from both Huntsman and the University of Utah Medical Center, getting this surgery set up and all the info processed.  Seems it will be a busy operating day, as there is "no room at the inn" at Huntsman Monday, so my surgery will be at the U.  Dr. Scaife will still be the surgeon, though, so that's good.  We have to be there Monday morning at 10 and the half-hour to an hour surgery is scheduled for 11:15, give or take.  I'll be home early afternoon and all will be well.  Dean was only too happy to take a day off (he has complained mightily that he's sick and tired of 10-hr shift work, so I don't blame him for wanting this, even if it means hanging out in the hospital with me for a few hours!).

It will take a week (or less) to heal and then I'll be starting the iron infusions on March 19.  Karen explained that I'll get them in the beautiful Infusion Center, they'll last about an hour, and I'll have five treatments over the span of two weeks--so, every other day, basically.  I got the schedule set up and they're all early in the mornings, first thing.  It will motivate me to get up with Janessa, get dressed as she gets ready for school, drop her off and then head up the hill to Huntsman.  I think it will work out great and I'm especially excited to see how these infusions will make a difference to my anemic blood.  I'm expecting miracles, of course...I want to be full of energy and zip after we're all done!

Did you know that symptoms of anemia are "weakness, fatigue, and IRRITABILITY"?  Ha!  Yep, you could ask Dean and he'd tell you all about it.  I've been pretty grumpy with him lately.  I'm going to blame it all on the lack of iron!  Sorry, honey, I hope to be a new woman when these infusions are done.  You're wonderful...I really do love you so much.

Pull Out A Cot

Last week I think it would have been easier to set up my sleeping bag and spend the night at Huntsman - we were there more than we were at home! Tuesday afternoon was the brain MRI that we waited so long to get approval on. It was later than our usual appointments - 5:00 - so Dean and Janessa came with me. It was pretty much business as usual. They got me right in and right out, probably because they were anxious to get home as well. It still took three pokes from the first technician, who then called for help from a second one, to get the IV put in. Number 2 tech had success on the first poke, thankfully. I listened to some very loud Top 40 tunes, but it was better than listening to the noisy machine. Three Katy Perry songs in a row! Nice! I always worry about what my brain is showing & doing during this test...have to keep thinking happy thoughts & strong brain waves with NO cancer in them! When I finished, I discovered Dean had been chatting with an older couple in the waiting room who had had to drive from a little town near Reno - about a 7 hr drive! Oh, how blessed we are to have a commute of mere minutes rather than hours!

Wednesday - went to see Dr. G to get results from MRI, but it turned into sooo much more. I have my own personal "assistant", Darren, who is jumping through hoops to get me into the new PD-1 trial, and he met Linds & I at the check-in desk first thing. I needed to have blood work done & he suggested that I have an IV put in, "just in case" I needed more blood work specific to the trial. Great idea to save my poor, overworked veins - and as it turned out, exactly what I needed. First of all, good news: no mets in the brain! HUGE sigh of relief. Not so good news: my lab results show that my hemostat numbers are down & have been declining for a while. Low red blood cells, low white blood cells, low hemoglobin, etc. Dr. G is concerned. It means I don't qualify for the trial until we can figure out the "why" and get the numbers up. It also means a simple fever could be "life-threatening". Now I'm concerned, too. It could be caused by a couple of things: best case scenario, nutrition; worst case, melanoma in the bone marrow. WHAT? Good grief! Since Dr. G is Mr. Thorough, he has already set up a bone marrow biopsy for Thursday, a simple procedure, he says, but it scares me. He has also put in an emergency order that I speak to a nutritionist TODAY (not a usual request, for sure). Obviously, I've lost a ton of weight (100 lbs in the past 2 yrs) & because of the Whipple, I haven't eaten well for the past 9 months. So, I liked this plan a lot. Before I could see the nutritionist, I had to have more blood work for the bone marrow biopsy (see how the IV came in handy right then?). Linds & I go to our favorite "check-in" gals to get everything ordered & they are amazed at the "new adventures" I'm having. Turns out that my wimpy little veins would have to give up another 15 vials of blood for testing! Oh my goodness! The usual amount is 2-3 vials, so I was wilting at the mere thought. Happily, due to the IV, those 15 vials were filled quickly & Linds and I were given food cards from Darren to grab some lunch in the Huntsman bistro on the 6th floor while we waited to talk to the dietician. I was so grateful for the info I got from her when we met. She asked me about my daily routine, which basically depended on whether or not I was dealing with a painful stomach & diarrhea that day. If so, I existed on crackers & water! She gave me examples of what would help & what would make the day worse, simple things like adding calories to what I was already eating: peanut butter or cheese on the crackers, no blueberries on my oatmeal (too much added fiber), more bananas, apples without skin, cottage cheese, veggie dip, smoothies, Greek yogurt, Boost protein drink, more lean red meat, etc. I could do that! And of course, she wanted me to cut down on the sweets I crave & instead, substitute one healthy snack per day. I could do that, too! I felt like I finally had some workable advice. It was very empowering, and as I write this post, a week later, I can honestly say that I have had a much better week, food-wise: less pain, less diarrhea, more energy, more appetite etc. Hooray! Just what I needed. What I didn't need, but what is fast becoming the norm, was another long day at Huntsman, which wore me out completely. I had planned a little get-together with two wonderful old friends later that afternoon & decided that I really wanted to see them and have the visit, but when one of them looked across the table at me and said I looked very tired, I knew I was done. Whew. Talk about info overload & blood work only a vampire would love...

 

Thursday - Linds & I were back again for the bone marrow biopsy. I had been given a prescription for Avidan?/Lorazipam (to relax me for the procedure), which also happened to be the drug I was given in the ER after complications with the Whipple, the drug that made me hallucinate & go completely crazy. Dr. G's nurse, Karen, looked it up online to make sure what drug I was given and couldn't believe what she found. The ER had given me 2mg of Avidan by IV, which was probably twice what I should have had, especially since I am such a "narcotic virgin" (Karen's words). No wonder I was nuts that night! She laughed & said I should only take half a pill, which would work just as well for me as a whole pill for someone else. Weird. As we were waiting for Dr. G in the procedure room, I asked Karen if this biopsy was going to involve a huge needle/turkey baster-type thingy that sucked out a ton of liquid bone marrow out of my back, "like on TV", and she just laughed. "I don't watch medical shows," she said, "because they're so far from the truth." Who knew that marrow is red, like blood, and that the "tool" used is a small "drill" that extracts a tiny worm-like sample of marrow? After Dr. G came in and put on his "Swedish" plastic scrubs (they were yellow & blue!), he had me lay on my tummy, where I was so relaxed, I felt I could have taken a little nap. He numbed a spot on the small of my back to the right of my spine; he explained that there are two "plates" there that are close to the surface of the skin and contain good amounts of marrow. Then he made a hole in the skin where he could insert the drill to get the biopsy. He was in a good, chatty mood, and that helped ease my mind. It didn't hurt - there was just a lot of pressure when the doctor pushed on the drill. Unfortunately, we found that I'm not only a hard "poke" for blood, but it took four tries (four holes) to get a good marrow sample. After the third try, Dr. G asked how I was doing & I said okay. Doc said, "Well, I don't believe you, so since I need to do another hole, I'm giving you some more numbing meds." Yeah, I was glad. I'm sure that last one would have hurt a bit without it. It proved to be the good sample needed & Dr. G was pleased. A bandage and a promise that we'd get the results Monday afternoon, and we were out of there.

Monday afternoon - Karen calls my cell phone while I'm sitting at the school waiting for Ness & asks if I'm in a place where I can talk. My heart sinks a bit. I've imagined all the worst things the biopsy could show: do I have leukemia? Something even more serious? It's scary. So when I hear her say that the results have come back completely clear and wonderful, I am nearly overcome. In Karen's words, they are absolutely "tickled" with the results. Me too. No melanoma in the blood marrow. Thank you, Lord Jesus. This is the best news.

More appointments upcoming in the next weeks. Blood tests have shown that I'm anemic and very low in iron, so now the plan is to work on that. There's always something. But as long as the good news keeps outweighing the bad, I'm grateful.
Enjoy the pictures (thanks, Linds). I find them interesting. I'm learning so much on this journey.

Teen Support

Last week was another wild journey at Huntsman, but I want to wait until tomorrow to post more about that.  It will be a L O N G post, so be prepared.  So much happened that has never happened before, I'm still processing it.

Instead, today, I wanted to post about a wonderful experience my Janessa had at school last week.  She is a sophomore at Bountiful High, just barely 16 years old, yet she is learning life lessons that many teens have no clue even exist.  So, when she told me about this experience, I felt both joy and pain.  You'll see...

Late one night last week, a text went out to the student body that the mother of one of their fellow classmates had passed away.  To show support and solidarity, everyone was invited to "dress up" the following day--girls in dresses, boys in suits & ties.  Janessa didn't recognize the name of the boy and felt like she didn't have the time to figure out something dressy to wear, so she decided not to join in, a decision I think she regretted from the moment I dropped her off at the front steps of the school and she saw one of her best friends in a skirt.  She hadn't told me about the text, so I had no idea what was up until she came out of school at the end of the day, glowing with the Spirit and excited to tell me about what had happened.

As it turned out, this grieving boy attended only one class that day after his mother died, and that class was Seminary.  It was no coincidence that Janessa was also in his class--she just hadn't known his name.  The Seminary teacher planned ahead of time to abandon his regular class routine and use the hour to allow the kids to bear their witness and testimony of Christ and life after death and the beautiful plan our Heavenly Father has for each and every one of us.  Janessa said it was amazing and one of the best things she has ever experienced.  The Spirit was strong and touched each person there.  She said she felt a great support for her friend and that he was comforted by that support.

At that point, I casually asked, "How did his mother die?", and of course, Janessa meekly answered, "I think it was cancer."  Of course it was.  Cruel, wicked, hateful cancer.  So, yes, I felt both joy and pain.

That wasn't the end of the story.  The school's basketball team had advanced to the championship finals and out went another text that everyone attending the game wear pink in honor of this sweet family.  The team lost the game...but comments were made by announcers and school officials that the solidarity and support shown by the student body and their families, all wearing pink, meant more than any ballgame ever could.  It sent a message, a clear and wonderful message of love and hope, all initiated by some very sensitive and caring teens.  I'm so grateful my girl associates with peers like that every day.  It brings me much comfort, too.

Answered Prayers...again

Insurance approved the brain MRI yesterday. Praise God! When I called the doctor's office with the authorization number, they were ecstatic. Appointment has been set up for next Tuesday at 5 pm. Dean will be able to take me & maybe Janessa will tag along, too. Then, I'll see Dr. G Wednesday morning to go over results & talk about our plan of action. I'm so relieved. Now we can move ahead. I celebrated this morning with blueberry oatmeal. It's going to be an "up" day, no matter what...

Insurance Issues

No doctor appointment this morning. I had to cancel because I still don't have approval from the insurance "gods" to get the MRI scheduled & Dr. G wants that done before we can move ahead. I finally got involved yesterday (nurse Karen has been fighting with them single-handedly so far, poor girl!) and called to see if my own voice would make any difference. Nope. I often think they could care less. It's not like I'm pretending to be Stage 4 or that I go out and request scans & MRIs. Just once I'd like to say, "let's switch places and see how YOU feel." They told me that my doctor needs to request a "peer to peer review", as if he doesn't have anything else to do with his valuable time & energy. I'll call the office this morning and tell them and we'll go from there. Good grief!
This morning, I got all watered up for oatmeal with fresh blueberries for breakfast...but I guess I'll have to wait until lunch. My stomach is on an "every other day" roller coaster, full of ups & downs, and today decided to be a "down" day. So, I'm drinking breakfast - chocolate-flavored protein. And since I'm still in my jammies, I guess Einstein & I will snuggle and watch some TV. Maybe that will take my mind off the issues that, quite honestly, I really have no control over at this point. Very frustrating.

The Latest

Last Monday, February 11, I went into Huntsman for the follow-up scans after all my IPI treatments. It was a late scan & Dean was home from work, so he could have taken me, except that there was an important parent's meeting at the high school for all Driver's Ed students and he needed to go with Janessa to that. My ever-dependable Linds and sweet, happy Jane took me to my appointment instead. So grateful for them! Labs were fairly simple - IV was in on the second poke, but it ended up in my right forearm, which was kind of unconventional. Didn't have to wait too long & I actually enjoyed sitting in the waiting room, where the late afternoon sun was shining through the big picture windows right on me. Ah, the warmth & Vitamin D! I went in for the scan & it was pretty obvious that I was one of the last for the day - the wind-down had begun. The scan was for chest, abdomen, pelvis, and neck, and after a few minutes the technician told me they were starting the IV contrast. I could feel it enter my veins - it's a distinct warmth that travels pretty quickly from "top to bottom". All seemed to be going well until I felt a sharp sting in my right arm at the IV site. It kind of took my breath away - I really have never experienced something like that before, and I knew it wasn't right. I was inside the scan tube, so I said that my arm was stinging. The technician said, "What?", and I repeated myself. "My arm, where the IV is, is really hurting!" He said, "Okay, we're done with the scan, so I'll stop the IV." The pain lessened a tiny bit, but I was sure something had happened. In came the "team" to survey the "damage" , talking mostly to themselves & not to me. Finally I said, "Did the vein blow?" and one of the nurses said yes. The tech took out the IV & started to apply heat & pressure. Some contrast had definitely leaked into my system, but he assured me that it was "minimal" & my body would naturally absorb it, and in the meantime, he was pressing on the vein to express as much as he could. He thought I would have a bruise, but I was surprised when one didn't appear. It was tender, but not black & blue. Weird stuff, though. I guess there's always something "new", even after all the scans & contrast IVs I've had. And though that was scary, I walked out of Radiology & there was my little Jane, twirling & bouncing & making everyone smile and laugh. When she saw me, she called out, "Grammy!", and came running to give me a big hug! It was precious! She can come with us ANY time!
February 13 was the doctor follow-up. Unfortunately, my insurance had once again denied the brain MRI I was supposed to have before this visit, but at least we would get the results of the scans. The place was packed and we did have to wait a little while, so the anxiety grew. Dr. Grossmann, in his usual way, came in and simply announced that the scans were not quite as positive as we had hoped and "here's what our next plan of action will be". Of course, my heart sunk, but I'm always so grateful for his honesty & hope, in spite of results that we wish were better. He said it looked like I had "progression of disease", but it was progression with a "lower case p". He outlined several options, including a brand-new trial study that was just approved at Huntsman last week! How amazing is that! Once again, I was reminded that it is not a coincidence that I have this monster disease at this moment, when so much new information & research is coming into the fight. Finally, when he had outlined Plans A, B, & C, he turned to the scans to show us the "bad news". Tumors in the liver and shoulder seemed unchanged, but there was a new tumor in the groin, deeper in the tissue than the one I can physically feel. So disappointing! As Linds & I peered over his shoulder at the computer screen, he suddenly realized the comparison scan was dated in September, when actually my latest scan was in December. He wanted to talk to the radiologist about this and said he would send in the new trial coordinator to talk to us about me possibly applying for the study - which, by the way, I'd be the first participant from Huntsman. He left the room and I got teary with discouragement. All the anticipation of answered prayers (answered in "my will" & not necessarily "God's will"), all the hopes & positive wishes, suddenly dashed in an instant. It's an emotional journey, this wild ride. Dr. G returned before the trial coordinator had arrived & he was noticeably more hopeful. He said things looked better when compared to the December scans & that we were now looking at "progression with a very tiny p". The main bright spot was that the liver looked better, and this latest news might determine which option we tried next. It possibly could simply be a "wait & watch" approach with scans again in 8 weeks. He said he was taking my case before the Tumor Board the next day and that the group of oncologists, surgeons, and specialists would go over my scans & give their own recommendations for action. I would be the star of the show! - well, at least my nameless, faceless scans would be. For the first time in the visit, I felt hope. As Dr. G was talking to us, the trial coordinator arrived with his thick stack of reading material for me to take home & study; but, he still took the time after Dr. G left to discuss all the important aspects with me. It sounds very promising, as if THIS PD-1 might be our miracle drug, and I found that I could actually see myself going through this treatment. We'll see. It certainly has the potential to "unlock" my melanoma cells & allow the fighter cells to attack them directly. Awesome.
Still waiting for the okay to have the brain MRI. If there are no metastatic cells in the brain (which have been clear from the start), we decide on the options. If something does show up (please, God, no), then we have to radiate the brain before anything else. If there is anything of greatest importance to pray for, it's for a clear MRI. After that, we move forward, taking all the info, advice, & inspiration to determine the next steps. So, for now, I'm on hold.
Physically, I'm okay. No new symptoms or pain. Emotionally, I'm teetering a bit. After the appointment, I crawled into bed at 4 pm & didn't emerge from the bedroom until the next morning. I was drained & sad. I cried when my puppy came in & whined for attention. I cried when Janessa came home from a friend's house, brimming with news, and only quiet Dad to share it with. I cried when I had to cancel plans to attend a Relief Society meeting again & was assured that It was all right and I would be prayed for. It's hard. But, I knew I would feel better in the morning, and I did. The sun was shining, I felt a tiny bit of warmth in my cold bones, and hope had returned. Things will work out, they always do. God will never leave me alone. "Fear not, doubt not..." I will try.

All Things Considered...

I had my fourth and final infusion last Wednesday. In spite of a snowy drive that took twice the time to get to Huntsman, it was a great day for me. Blood work and IV were accomplished on the first poke - a miracle - and the infusion itself seemed to speed by, time wise. I had my iPad to keep me occupied and my cute Linds to laugh and share thoughts with and we even got to FaceTime Chelsea & Mumsy in St. George...

...which leads to the next news. Mom had to have emergency surgery late Monday night for severe diverticulitis. She had suffered with terrible abdominal pain for several days (maybe weeks?) and finally went to the ER, dehydrated and weak. I am so sad for her...life has not been good for a very long time. And then to have the ER visit & surgery happen on Dad's birthday, well, who wouldn't be depressed? I just keep praying that she'll heal quickly and get some energy back so she can start moving & grooving again. I love her so much.

The great staff at the Infusion Center came in to sing a "graduation" song to me when my IV was finished and also presented me with a certificate & darling fleece blanket, donated by a Young Women's group from South Weber. I wish my smile could have shown how really happy that all made me. I feel very blessed right now.

My visit with Dr. Grossmann before the infusion was very hopeful, as usual. I told him I could still feel the tumor in my groin - smaller, yes, but still there - and was that a worry? He said no, the IPI's job is to teach and re-teach my immune cells to recognize the melanoma and that learning process will not end with the end of the infusions. If it is successful, it will continue to teach and remind those cells for YEARS to come! He said that as long as my 3-month scans show shrinkage in the tumors, the IPI is successfully doing its job. We want shrinkage and destruction to the tumors, and that may or may not take place overnight. Of course, worst case scenario, if there is not shrinkage, there is always a Plan B , C, and D with Dr. G. He said I would probably qualify for the new injectable drug that is put right into the tumor under the skin. I'm praying for the shrinkage miracle - and the final destruction of the nasty cells - but I always leave Dr. G feeling like a long-term survivor. I did ask him one question: does eating chocolate every day thwart the destruction of those cancer cells? He laughed and said, not at all - he does it every day, too! Nurse Jan said, it's medicinal! Gotta love it!

So, we keep going and we keep praying. Scans are in two weeks on February 11 with results on February 13. All things considered, life is wonderful...