Friday, March 22, 2013

Fast Track

I had my second iron infusion yesterday morning, but it came with its own miracle.  Early in the pre-dawn, we got slammed with rain and wind and I prayed that it would stay rainy...and NOT turn to snow.  I was a bit afraid to head "up the hill" to Huntsman in a snow storm!  As soon as I hit the button to have the garage door go up to take Janessa to school, she looked out into the world and said, "Wow."  I looked and cringed.  It was snowing--big, fat, fluffy snowflakes that were already sticking to the ground.  My prayers become more urgent...please, please, please let me be able to get there and back home okay.  I was especially nervous about slipping and sliding up the steep hills by the University of Utah.  Scary stuff.  First miracle--it was snowing less in Bountiful than it was at my house in North Salt Lake (the storm had already pretty much moved southward).  Good.  Driving into Salt Lake City, it was even less snowy; in fact, the sun peeked out through the clouds a few times.  Great!  And up by the university, I could actually turn off my windshield wipers and drive normal speeds and not have to worry about snow at all.  Fantastic!  Prayers answered.  Thank you, Lord.

I've decided I like these early morning infusion trips, even if I don't like getting myself showered and "made up" for the day so early (I usually take Ness to school in my jammies and a big Rocky Mountain Fab jacket and my slippers with no makeup and wearing my glasses--adorable, huh?).  For one thing, there are less people at Huntsman, so I pretty much get to choose which "pod" I get to sit in.  If you've seen some of my photos, you'll notice I've been "right up front" to the windows where the view is the best and I'm sort of left alone.  The nurses and techs are still fresh first thing in the morning and are so kind and caring (not that they aren't all the time, though...).  It's quieter and seems more relaxed.  So, I'm not complaining about these early times at all. 

I've also learned (mostly from overhearing people ahead of me at the check-in desk) that when they ask if I have a port, I say, "Yes, but it needs to be accessed", which simply means I don't have the IV in it it yet and someone will have to "jab" me.  It's an interesting process.  The nurse comes to my pod with her wheel-around cart.  We both have to wear masks to keep germs out of the port and off the actual IV.  She feels for the port boundaries and how it's situated.  I've already put numbing cream on the area at home, since it takes at least 30 minutes to take full effect, ao I have hardly been able to feel her touching my skin.  Then she puts on her gloves, opens all the packages and "dumps" them on the sterile pad (so she only touches them once).  She cleans off the area with a little sponge-type thing that has disinfectant in it right out of the package.  She tells me to sit back and try to relax, since she doesn't want me to go forward when I see or feel the needle going into the port (so far, I haven't watched it go in--don't know if I ever will).  She gets a larger gauge needle, feels for the middle of the port, and JABS the needle in.  The first time, I felt it, but it was more of a hard pressure on an already tender spot.  This second time was much easier and I wasn't even sure it was in until she pulled back and said, "Okay, you're all set and you can take off your mask now."  I hope every time gets easier and easier.  Pam at Dr. Grossmann's check-in desk has a port and she said she doesn't even put the numbing cream on any more.  It's just old hat.  Maybe someday...

Another interesting thing to me is that they give me two Tylenol before they access the port and let that get into my system for several minutes.  Yesterday, I asked why and the nurse said that they don't want me suddenly getting a fever or something.  Makes sense, but does it happen that much that now it's a standard deal?  She also said, "At least you don't have to take Benedryl, too, like the chemo patients.  It's just makes you sleepy all day."  Yes, I am glad of that, especially at 8:00 in the morning!  That's all I need is to have the whole day ahead of me and just want to sleep it away. 

The iron infusion itself takes about an hour.  The bag full of stuff is bright red, like blood (ugh).  They attach it to the IV and I'm ready to go.  I've taken my iPad both days and it's great to catch up on email and Facebook and Pinterest (sorry I pin so much, but I'm passing the time).  Yesterday, I also took some things that needed to be labeled for my Scentsy Open House this weekend, so that was good to get done while I was sitting there.  The nurses come back and check my vital signs a couple of times, too.  They're always asking about my low blood pressure, so I guess I need to ask Dr. Beckstead if I need to continue on the same dose or go every other day or ???.  I'm not dizzy or anything, but it does seem to concern some of the nurses.

The first day I was there, a sweet German family came in, with Grandpa German the one with the cancer.  I felt so bad for him as they started to poke around for a good vein.  How grateful I was for my port!  Grandson German was the translater between the nurses and Grandpa, and Grandma German and Mother of Translater German were also there.  At one point, Mother of Translator approached my little pod and asked, "I was just wondering if I could make you some tea."  I thought it was so sweet of her and really wished that I liked herbal tea more, but I had to decline.  She showed me the little packet she was holding and told me it was a delicious orange spice blend and "maybe you will want some later?"  I said, maybe I would.  It was so kind of her.

Yesterday, both nurses I had were also with me during the IPI infusions and they asked how things had gone.  When I told them why I was getting the iron infusions now and that I was going to try to apply for a study/trial, they were both happy to hear that Dr. Grossmann was doing everything he could to help me be accepted into that study.  Then, both of them asked about my daughter-in-law.  I was shocked that they remembered me and Lindsey so well with all the people that pass through their lives, but it was very sweet.  I always feel so loved there, and the fact is that they truly do care about each patient--and their families. 

When I'm done, they unhook the IV, put a little Band-Aid on my port, and away I go.  Yesterday, as the storm passed over Salt Lake, the skies were very dark and I could tell it was snowing outside.  More prayers that I could make it safely down the hill, now that I was up.  About 20 minutes before I was ready to go, the skies got brighter, the snow seemed to stop, and I was traveling on fairly dry roads all the way home.  Another miracle!  So happy for these little tender mercies that mean so much to me.  The nurse asked when I would be back and when I told her Saturday morning, she said, "Wow, they have you on the fast track, don't they?"  Yes, and I'm grateful.  I do feel better, even if it's not the shot of adrenaline like I was hoping.  But I can just feel my blood cells lapping up the iron!  Plus, the pancreatic enzyme prescription that Dr. Scaife ordered for me has been helping, too.  No terrible diarrhea since I started taking it!  I'm even starting to think I could venture out to the temple one of these days and not have to worry about an attack.  It makes me happy just to think about it.  Lots of good going on.  I like it.

Thursday, March 14, 2013

(Sort of) Bionic

Monday, Dean and I arrived at the University of Utah Hospital for my port placement close to 10 AM.  Check-in was easy and we were in the pre-op room by 10:30, me on the bed in the lovely hospital gown (and nothing else) and Dean mostly relaxing in the nearby recliner.  The nurse comes in to give us the plan, which first involved a couple of blood tests that Dr. Grossmann had ordered.  She admitted she had never heard of these tests before and said that one was actually a urine test.  I thought that sounded kind of strange, but you know me--do what the doc orders, no matter what.  Since I was fasting and hadn't had water for a couple of hours, I couldn't get a good sample.  That upset me a bit, but later found out it wasn't necessary--the tests were both for blood.  Good grief, let's get it together, people!  Happily, the girl from the lab got blood on the first poke and Dean and I joked, "And why am I getting a port put in?"  I know, I know.  It all depends on the day and the tech whether I get poked once or a dozen times.  A nurse came in to take my vital signs and asked if I always have low blood pressure.  I told him I was on medication for high blood pressure and he said, "Well, it's working really well."  Then, we started to wait...and wait...and wait.  The surgery was scheduled for 11:15, but that came and went.  The front desk had given Dean a little ID card with my case number on it which allowed him to go to a computerized board that was tracking my progress.  My number was supposed to move along as I moved from pre-op to surgery to post-op, etc.  He kept wandering out to check on the board and though it was moving me closer to the surgery window, it was slow going.  A nurse came in and told us that there were delays (really?) and it would be another two hours...that was about 2:00 PM.  I was antsy.  I tried to lie down in the bed and close my eyes, but it seemed I'd just get sort of comfy when my tailbone would start to ache, so I'd have to sit up.  Then, I'd sit and play or read on my iPad, but soon my back would hurt.  I really wanted to go on a long walk, but I think they'd discourage that type of thing, especially for someone in a hospital gown and nothing else.  I took out my contact lenses and stored them in their case. We turned on the TV and watched some mindless shows for a while, but that got old, too.  Finally, Dr. Scaife's nurse came in and talked to me about some things.  She was the second one that day to ask me, "You've lost a bunch of weight, haven't you?"  She questioned my eating and how the Whipple surgery was still affecting me.  I told her the nutritionist had recommended I get a prescription for a pancreatic enzyme that would help what was left of my pancreas to absorb food better and she immediately said she'd write that prescription for me.  Hooray.  One bright spot to the wasted hours of waiting.  She again apologized for the delays and said the anesthesiologist would be in soon to put in my IV.  Soon, two of the operating room nurses walked in and I very loudly said, "Whew!  Finally!"  I think they got the message that I was getting testy.  The anesthesiologist came and put the IV in on the first try.  I was impressed again!  These people are good!  And then, here was Dr. Scaife herself to say it would only be another half hour or so and to explain how the port was going to work.  She said she would place it on the left side, since I was right-handed and it would be easier to care for that way, and that the tubing would be going UP to my jugular vein.  For some reason, I thought it would be going to a vein above my heart.  This sounded scarier!  She also explained that while it was usually easy to access the port for IVs and infusions, etc.--fluid going into the bloodstream--that sometimes tiny clots would form at the end of the tubing, making it more difficult for blood tests--fluid coming out of the port.  She said that if the techs drawing my blood ever said that they couldn't access the port for that reason, they should call her office and talk to her or her nurse, and they would explain that it needed to be flushed to clear any clots, etc.  Made sense, but I thought it was going to be so routine.  I guess every good thing has its drawbacks in some way.  And of course, this only happens to about 10% of patients with ports...
Finally...finally...a little after 3:30 PM, the nurse comes to take me to the operating room.  I have a new warm blanket to put over me and I give Dean a hug and a kiss.  I remember going into the operating room, which is always like a freezer, and lying back on the bed.  Someone handed an oxygen mask to the nurse standing beside me and said, "Here, hold this, please."  He held it over my nose and mouth and I felt the cool, clean oxygen.  Then, the other person said, "Okay, breathe deep, I'm going to start your IV."  I take a few deep breaths...and I'm out.  (By the way, Dr. G and Karen had told me I would be "sort of" awake, not all the way out, but Dr. Scaife told me I would be under general anesthetic and that I might have a sore throat after from the breathing tube.  Wonder why the change?)
I don't really remember waking up, just that suddenly I was awake and someone went to get Dean.  The nurses checked a few things, I signed a few more forms, and then they told me I could get dressed.  I'm woozy, but feeling okay.  I tried to put in my contacts, but missed on the right eye.  Dean saw it in the sink, so I tried again and thought I had it in.  Turned out later that I must have missed again, because it's not there when I get home.  No wonder I was woozy!  I was looking out one good eye!  We went to our car and I'm incredibly tired and hungry.  It says 5:30 PM on the car clock.  Another long day at the hospital.
After "breakfast" for dinner at Denny's (oh, the pancakes tasted so good!), we got home and I fell fast asleep on the couch.  I'm not in any pain, just very tired.  I did take two Tylenol when I woke up and got ready for bed, but mostly for what I thought might come, not for how I felt at the time.  I slept all night, waking up with Dean at 4:30 AM when he got up to go to work.
Tuesday, I was sore.  Couldn't lift my left arm without pain.  My chest hurt.  I had a dressing on the port site, but the port itself was poking out under my skin.  I had two or three stitches under my collarbone where the tubing was put it (I guess).  I slept almost all day in the recliner with my sweet Einstein on my lap or at my feet.  Unfortunately, that dang tailbone was bothering me again, so I'd sit for a few minutes before I'd have to close my eyes again.  I tried to watch a movie, but kept drifting in and out of sleep.  I had a sponge bath before Dean came home from work and then we ventured out to Janessa's choir concert.  I felt pretty weak and vulnerable, like everyone could see the big bumpy port through my shirt and the section of tubing up to my neck.  I cried during Janessa's musical numbers.  How I love her!  She makes me so proud.  She is adorable and sweet, and I loved when she came running to hug me after the concert was over.  I was so glad I had a bit of energy to go, but I'll admit it wore me out again.
Wednesday was MUCH better, though I was still pretty tired.  The pain was better, I could move more, and I could actually take off the port dressing and stand under the hot water in the shower.  I made homemade chili and bread sticks for dinner and they tasted so good.  I went to bed early.  I was getting my strength back.
Today I have felt even better.  I got dressed before noon (!), I cleaned out my pantry, I did some laundry, and I even worked for a couple of hours.  I sat in the sun, reading my latest book while I waited for Janessa after school, and it felt heavenly.  It was also my first day on the pancreatic enzyme meds.  I have to take three capsules immediately after each meal and one snack, so four times a day.  I did pretty well until right before dinner and then, my stomach started hurting.  It lasted about an hour, but I haven't had diarrhea today.  That's a bonus.  We'll see how it goes.  Maybe I can put a little meat on these bones (especially the tail one!).
If every day gets better, I'll be in good shape by the time I have my first iron infusion next Tuesday.  I keep praying and the Lord keeps blessing me.  I know He is on my right hand and my left.  Even with this weird stuff in my body, poking out and making me feel a bit self-conscious, I still feel stronger because of it and I know it will be a blessing all around.  And Spring is coming!  The earth is renewing itself and I plan to renew right along with it.  I thank Him for sunshine and warm showers and food that tastes good and builds up my blood and for all He has given me.  What a journey!

Friday, March 8, 2013

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.

Thursday, March 7, 2013

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.

Monday, March 4, 2013

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.