Light & Dark

I'm sitting in the sun, moving the chair as the light scoots across the sky, and it feels sooo good, but not quite enough. I almost want it to scald me, like when I turn the knob to the hot water in the shower until it bites - yes, I really do that. It doesn't help my dry, itchy skin, but it soothes me for a few seconds , and so I continue to sit here, wishing there was more warmth and more light coming through the panes of glass. I hesitate writing this post because I'm depressed - mostly from the lack of light & warmth in my world of winter inversion - but also because I'm carrying some heavy burdens right now. Emails & texts have gone out (phone service is still sketchy), but everyone has their own weight to carry and I don't want to make this a sob-fest. So, I'll move my chair one more time before the sun goes behind the house across the street & I"ll resist crawling under my fleece blanket on the couch until I've finished this post. No more complaints for now. No more to say. Today's sob story ended.

I went to see Dr. Adler at the University last Thursday. My memories of him from two years ago we're not that complimentary; I thought he was blunt, hurried, and a little too high-and-mighty. This time, he came into the room cheerful, personable, concerned for my well-being, and ready to shake my hand. What a pleasant switch! We talked about my Whipple surgery and the symptoms that brought me to his office this time. We talked about the effect of having one-third of my pancreas surgically removed & how that relates to my symptoms now. We talked about my Creon prescription and how it should help my body absorb nutrients, digest food properly, and get rid of waste normally, none of which it was doing effectively. He asked if I had been told how to take the pills and I admitted that the only direction I  had received was what was written on the prescription bottle: Take 2-3 capsules with every meal and snack. He said, "When are you taking them?" I told him I usually take 2 after every meal. He shook his head. "That's the worst time to take them." He further explained that if I'm taking the capsules AFTER a meal, I'm already playing "catch-up", and because of my shortened bowel, the food has already moved quickly through the tract & is pretty much "on its way out" before the Creon enzymes can take effect. If I take them BEFORE the meal, the enzymes are ahead of the food & have no positive action in digestion or absorption. The ideal method for taking the enzyme is to have 3 capsules at my plate: take one before I start to eat, take one midway through the meal, and take the final capsule right as I finish. "Even waiting 10 minutes after a meal is too long," he said, which is what was happening 90% of the time. No wonder I wasn't getting any relief after taking the capsules! Dr. Adler said he was amazed at how often people were NOT told the proper way to use the Creon. Someone is falling down on the job somewhere! He said he expected I would feel more normal within a matter of days. Wow! Already there is a dramatic difference. I'm very encouraged. He also showed me the latest CT scan of my pancreas and just what the "cut end" looks like. He said that if this proper way of taking the Creon doesn't work, the next step would be to investigate if that "end" is properly sealed. If it isn't, it could come down to being surgically repaired. But, Dr. Adler (and others, including myself) has only good things to say about my surgeon, Dr. Scaife, so that is a very remote possibility. Thank goodness. I certainly don't want another pancreas surgery in my lifetime. I go back to see Dr. Adler on March 4 to see how things are working out.

That was definitely a "good news" day & I needed it desperately. It was a sweet answer to prayers and I was very grateful. It was a ray of sunshine and a burst of warmth that offered some relief to the gray, hazy skies that even the sun can't penetrate. Tiny drops of mercy (and this darling 6-month old!) are keeping me going...

Something Right

When the phone rang the other day and Caller ID said, "University of Utah," I answered it and held my breath. It was Dr. Shami, at last! (Isn't it great that some of these doctors still make their own follow-up calls? I love it.)  He apologized for taking so long in getting back to me with the results of the bone marrow biopsy & explained that they had tried to run EVERY test to rule out what could be causing the low blood counts. Ultimately, they found NO melanoma or leukemia or Myelodysplastia in my blood marrow! The chromosome testing also came back normal. Normal! It gave me goosebumps! Dr. Shami did say that there was not a lot of tissue in the biopsy to test for someone my age, but he attributes that to my recent chemo & radiation. He also admitted that he has no explanation for the low blood counts, other than that those same treatments have depleted the counts substantially, and that, hopefully, they can be built up again. He said to continue my follow-up visits with Dr. Grossmann, but that there wasn't anything going on with me where his services would be required. I said this was good news, and he said, "Yes, it is, it's very good news." I am so relieved.

Still waiting to hear about my stomach bloat, but the worry-voice in my head isn't sounding a blaring alarm right now, so I can be patient. For now...

Here are some pics from the holidays. They make me smile! Avery decorating a gingerbread man on Grammy day, Jane & Ally in front of one of the decorated shop windows at the Grand America, and lunch at Spagetti Factory with Knox & Silly Olive!

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Happy 2014

First day of the new year! I didn't roll out of bed until almost 10 AM, even though we were fast asleep by 1 AM this morning. Just ask Janessa - it was another boring New Year's Eve with a movie, Papa Murphy's pizza, watching the ball drop in NY Times Square, and a goblet of "bubbly" (sparkling cider) at midnight. She would have much preferred hanging out with someone - ANY one other than Mom & Dad - but such is life. Maybe next year?

I am grateful to see 2014. There was a time (March 2011) when I didn't think there was anything beyond a few months at most. But today, sitting here in my jammies, with a tummy full of omelet, watching the Rose Parade, I believe anything is possible: the promises of 2014 - with a new baby grandson in February and all the rest - to the promises of 2015 - with Janessa's graduation from high school - to everything that follows. I feel okay. My nagging questions come from not knowing, whether it's the endless waiting for test results or wondering how we can afford our medical bills & still plan some fun family times - that's what weighs me down. 

I'm still (3 weeks later) waiting for the results from the bone marrow biopsy. I've called Dr. Shami's office twice & still no word. I called Dr. G's office yesterday because I had questions about what I feel is a bloated stomach (weird symptoms) & they're going to help me talk to someone more knowledgable about the pancreatic enzymes I take after every meal, which don't seem to be working as well as they used to. More waiting... The lack of information does seem to lean toward a "non-serious" prognosis, but I can't quite believe that yet. I make excuses for the holiday bustle keeping normal business from moving forward, but not sure that's correct. Everyone wants to know if I've heard anything yet - believe me, you'll know when I know. I'm also still waiting (7 weeks later!) for my new contacts, but don't get me started on that fiasco. It just makes my blood boil!

I loved my family time this holiday season. Spent "Grammy-time" with all 7 grands & it was heaven. Wish we could have done more together (sometimes my energy and the cold temps & bad air quality outside keep me inside my "cave" like an old sleepy bear), but I treasured the precious moments we did have. I have a fantastic family. I love them dearly.

I pray for a wonderful year ahead. I pray for more hope, more miracles, more good news, more strength, more laughter, more love, more patience, more hugs, more spiritual experiences, more happy memories, more comfort, more courage, more answers, more dreams coming true, and more joy in every day life. 

Blood & Guts

Quite the title to this post, huh? Right now, I feel like that's all I think & talk about...my blood and guts (I don't think I'll ever get used to doctors saying "gut" instead of stomach - weird). If you ask how I'm doing, I'll say "okay" and not much else, because, honestly, I'm getting tired of talking "medical" - and I'm sure you're all tired of hearing about it. And beware...this post is FULL of medical jargon and my next uphill climb, so if you're tired of reading about it too, stop now. Go have a cup of hot chocolate and curl up in your favorite fleece blanket and read a Christmas book. I wish I could join you. I thought I was getting a reprieve from all the cancer worries until the next scans in February, but it was not to be. Shoot.

Yesterday, I went to my first appointment with the hematologist, Dr. Shami. There are very few clinics at Huntsman where I haven't had to walk through the doors, but Clinic 2C was one of them. It's on the way to Dr. G's clinic, and Lindsey & I have often wondered why it's so busy and different from the other clinics - this one has a waiting room outside a glassed-in reception area, where the others are all open to their waiting rooms. Even the name of the clinic was mysterious: BMT/Multiple Myeloma. I soon learned all I didn't really want to know.

Regular lab work was done, multiple pages of new patient forms were filled out, a detailed visit & exam was performed by Dr. Shami's assistant, Aimee, and then I waited for the doctor. I had the good sense to bring my library book and got in several chapters before they both came back in the room. Dr. Shami was a very nice Indian(?) doctor who sat on the edge of the exam table as he talked to me about my low blood counts. I loved when he said he had already talked personally to Dr. Grossmann about me, so he felt he knew my story pretty well. We talked about my notorious Whipple surgery and how my health had been affected since then. Then he got down to the "blood & guts" of the matter. He said he felt there were probably three reasons for the low counts. One was MDS or Myelodysplastic Syndrome (you can look it up - I did - but take a deep breath first & don't automatically assume I have it). I was actually shocked and discouraged that one of the causes of MDS is radiation treatments - gee, thanks for giving me something else to kill me. A step further from MDS was AML or Acute Myeloid Leukemia (again, look it up if you really want to know, but I'll just tell you that it's not fun reading matter). The third reason was Hyposplenism, which is defined as "absent or reduced splenic function, usually due to surgical removal (spleen)", which would be part of the Whipple. As you can tell, the third reason would be the best, as far as further prognosis and treatment. So, what's next? Again, there were more options that included waiting to see if the counts would go up - not really an option, since they've continued to drop for the last six to eight lab tests. Dr. Shami's recommendation is that I have another bone marrow biopsy (remember the one I had in Feb?) that would be tested much more extensively to look at chromosomes and markers and blasts to see if it's performing the way it should and if it contains any cancer cells. Gulp. And I thought melanoma was the only beast I had to slay!

The biopsy is scheduled for Monday, Dec. 9. Dr. Shami said he would call me with the results, but that they may take up to a week to be fully analyzed. He said at that point, if the results required his expertise as a hematologist, I would come back in & receive the next plan(s) of action. If the results were within Dr. G's expertise, I would go back to him for further treatment, etc. Dr. Shami's actions could include transfusions, chemo, and stem cell work. I was kind of in shock at this point in the discussion, so more details will have to follow. What I do know is that I now have to worry about one more thing.

About Clinic 2C, BMT stands for Bone Marrow Therapy (or Treatment) and Multiple Myeloma is "cancer that starts in the plasma cells in bone marrow". The reason for the glassed-in reception area separate from the waiting room? Germs. Problems in the bone marrow account for serious infections, so many of the patients have to wear masks. Dr. Shami suggested, "If you go to church, sit quietly in the back...and don't let anyone cough on you!" When I laughed a little, he didn't. There you go.

BUT, I remain completely confident that The Lord will bless me and answer all the prayers being offered for me by small & great. I've waffled back & forth with "what if", but what always remains is the positive spirit of faith in God. He has performed so many miracles for me, and though I'm sure my allotment is exhausted by now, yet He continues. He has suffered all for me. He knows how I feel. He even knows this feeling of keeping my worries contained in these posts instead of speaking them aloud & seeing someone's face register alarm & fear. I'm okay. Really. It's Christmas time & I'm cozy and warm and bathed in the lights on my tree. Just keep praying for my blood & guts. Besides, how could you not smile at this cherubic face? (Jax at 5 months)

Grateful for God's Gifts

Monday, November 18, was the big scan day. PET scans and brain MRI - those are the big guns. They see everything in 3D & color, from the tips of my toes to the top of my head. Amazing, really, but they make me oh so nervous for all the little things that could be lurking under the skin and inside the tissues. Lindsey patiently sat in the waiting room for almost three hours while I had the PET, and then Dean arrived to sit through the next three hours, as we waited for the MRI appointment and actually had the scan. When I finally emerged, he was all alone in the waiting room (everyone else had gone home by then) and admitted that he probably fell asleep & snored. I had the worst rumbly tummy from drinking the contrast while fasting, which only added to my anxiety level. Tuesday, November 19, Lindsey and I were back at Dr. Grossmann's office for the results, knowing that Dr. G was out of the office and we would be seeing his assistant, Carolyn, and nurse Karen. Even though I had great faith in the fasting and prayers that had been offered so unselfishly by many good souls, I was nervous and imagined the worst, just to steel myself for bad news. But, God is more powerful than any tumor or any doubt. He will never leave me alone. He will never forsake me. The news was the best EVER. Nothing new on the scans. Existing tumors are shrinking - the groin tumor is half as big as on the last PET scan. The little tumor on the inside of my left knee is so small that it didn't even show "hot", which means that it is "well-behaved." Good job, you little stinker! Nothing shows up in the liver. A little spot below my collarbone that has shown up on several of my latest scans has disappeared. A tiny spot that was being watched on my right leg has disappeared. Brain is "perfect". Even my low blood counts have gone up a bit, which is very encouraging. I have an appointment with a hematologist specialist to see if we can get my blood counts as normal as possible, just in case I need to qualify for a trial down the road, but those appointments will be CAKE, comparatively-speaking. Next scans are scheduled for the middle of February! Doesn't that sound wonderful? While I was in the dressing room/waiting room for the MRI, a man came out of his dressing room to wait, too. He started to talk to me and asked, if I wanted to tell him, what I was having an MRI for. I told him I have Stage 4 melanoma. He said his sister-in-law has melanoma and that it started with a small tumor in her neck, just like mine did. She, too, had been through several surgeries, radiation, and chemo, but continued to do well. Then, he told me that she was first diagnosed "seven or eight years ago"! My heart was full! There was hope. If I can do this well and keep fighting for the next four years - and beyond - I will be eternally grateful. That is what I pray for: more and more and more time... I just cannot express my thanks enough. There are no words to tell how grateful I feel for God's gifts. He has blessed me abundantly and given me renewed hope and faith in miracles. The faith of those who pray for me, who fast for me, who think positive thoughts for me have all added to the blessings poured down on me and my family. I am filled with thanksgiving. These are the best gifts of all. Praise God. Hallelujah... Happy 9 years today, Chelsea & Rob! I love you!

Constant

Monday, I was sick, my same normal sick. No biggie, but tiring. Tuesday, I tried to make up for not doing anything the day before, and things were tough. Tried to straighten the house & move furniture for carpet cleaning, traffic to & from school was crazy, Einie really needed a bath, and my girl's first extraction at the dentist was the "most painful thing" she's ever felt...ever. To top it off, I was on the phone four or five times, trying to get my scans coordinated between the doctor's office & the girl at Radiology, and trying to get a prescription refilled since I was down to my last pill. There I was, sounding strong but feeling weak, still in my pajamas at 1:30 in the afternoon with 45 minutes to go before school let out. I got into the shower & heard the phone ringing again. There was a message from Nancy in Dr. G's office, saying that our new health insurance was two weeks behind in their pre-authorizations for scans, so it was doubtful I would be going ahead with the PET next Monday as planned. My heart sank. As much as I hate these scans, I hate not knowing what's inside even more, and pushing them further down the line just makes it worse. I wondered how this news would mess up the holidays, feeling certain it would. Sad, sad, sad. Went to bed with a prayer that things would be better in the morning.

And they were, of course. Early, 8 AM early, Nancy called again to ask if I had talked to Radiology about a tentative schedule for the scan & I said, yes, somewhat warily. She said, "Good because the pre-auth went through and we're good to go on Monday." I couldn't believe it...had I heard her correctly? I think we both said, "Awesome!", at the same time. I hung up the phone and cried. Another miracle. They never cease to amaze me. They always make me cry. God's love is constant, even when I doubt. 

I am extremely grateful for the constant prayers for me & my health & my family. I am humbled by the special fast my sweet ward family will be offering in my behalf this Sunday, along with members of my family & friends. Miracles are already coming. I cannot say thank you enough...but I'll keep trying...

(The best part of Tuesday, 11/12/13, was the anniversary of these two cute "kids" that I love dearly!)

No Celebrations Yet

It seems like I get to a point where maybe I can relax a bit with this danged cancer...and it reminds me that it will probably never happen (notice how that sentence used words like "seems like" & "maybe" & "probably" - just trying to stay real here). My appointment yesterday was supposed to be a celebration of the final IPI infusion, but this time around there was no "feel good" certificate or comfy handmade blanket at the end, mostly because it just is not the end. IPI is done, for now, but what else is to come is already being considered. 

A few weeks ago, I discovered a big ugly bruise on the inside of my left knee. No idea where it came from or how it got there, which is typical for someone on blood thinners, but as I touched this bruise, I realized that there was a teeny lump in the center of it. I wanted to believe it was a blood clot - maybe? - but I've felt enough melanoma lumps to see red flags now, no matter how small they are. I even asked Dr. Avizonas to feel it & assess it at my radiation follow-up appt last week. She could see the bruise, though it had faded a bit, and thought it was just blood from the impact of being whacked there. Of course, she said to keep an eye on it, but didn't seem too concerned, which made me relax too...at least until Tuesday night, when I started to wonder & worry again, knowing that I had discovered it for a reason & I'd have to bring it to Dr. G's attention the next morning.

Arrived at Huntsman super early, got my labs done & my port accessed for the infusion, found out I had gained a couple more pounds (Halloween candy to blame?), and got settled in the exam room to wait for nurse Carolyn. First thing she always asks is, "do you have any new concerns or complaints today?" Darn. First thing. It was inevitable. I told her about the bruise and showed her my leg. I honestly have not looked at the thing for a couple of days, so I was kind of surprised that the bruise had faded to almost nothing. But just in case I thought I wouldn't be able to find it, there was a yellowish circle around the pea-sized lump. Carolyn felt it, squeezed it (yeah, this little guy hurt), and got that worried look on her face that I've (unfortunately) seen more than once. "Do you remember hitting your knee?" she asked, and I said, no, I just noticed the big bruise one day after showering. "We'd better get this checked out then," she said. She went on to say that if I really had hit it hard on something, she wouldn't be as concerned because it would explain the bruise & the lump. But, since I couldn't recall exactly how it got there, the lump may have caused the bruise. That's something a cancerous lump would do. Of course, it would, the little devil. Weird.

The shrinking tumors in my back & groin were felt and then dismissed in light of this newest threat. Suddenly, they had taken the back seat. The techs from the lab were called to do a needle biopsy there in the exam room and arrived within minutes - one of the many perks of an early morning appt. three "passes", as they call the needle passing in & out of the lump, were taken and yes, it hurt! I admitted it to the senior tech and she said it was because the lump was so small, she had to pinch it between her fingers to do the passes. Lovely. Finally, they had enough "stuff" (tissue? blood?) to test, again done right there beside me. Whispered words I didn't understand, and then the announcement that it looked "suspicious" but required further testing. I knew. It was melanoma again.

Nurses Carolyn & Karen came back into the room to talk strategy. Dr. G was in a meeting, but they were keeping in contact with him. My blood tests had also come back and the notorious platelet & white blood cell counts were low again, even lower than they were at my last appt. Protein and albumin were also low, though I had had a protein drink for breakfast. So weird. What to do about that was still the burning question, but for sure, Dr. G wanted me to finish the IPI infusions & then we could figure something out. Because of the new tumor, my upcoming CT scan needed to be changed to a full-body PET scan so that it would include images of my legs. My wild imagination now believes there are tumors everywhere - legs, arms, brain - every aunt, uncle, & second cousin cancer cell coming out to party & invade. Horrors. But, I know it has to be done because after finding this little guy, I'm seriously NOT going to go looking anywhere else, no matter how many bruises decide to pop up. Not going to touch them, no way. If they're there, the scan will catch them...and everything else I don't want to know about right now.

I went to the infusion center pretty shaky from the news & the biopsy and discovered the only "chair" they had available was a BED. As if I didn't already feel like the typical cancer patient, which I usually don't, by the way. But it was kind of nice & I quickly recognized it as a mixed blessing. I could sit/lay more comfortably, I could turn on my iPad & play the Pandora shuffle (I love that I can listen to Keith Urban, Nat King Cole (Christmas Radio), Meryl Streep & "Dancing Queen", and Britt Nicole one after the other) without my head phones. The time went by fast...another blessing.

So again, I wait: for the exact date & time of the PET scan, for the formal results of the biopsy, and for an appointment with a hematologist who can, hopefully, figure out my blood counts. And then, what do we do with the lump? If he's the only one to come to the battle, I think out-patient surgery is on the horizon. If he's only one of the offenders, another course of action will be planned. It will be okay. It will all work out. We'll keep that celebration on the back burner for now.

Until the next update, these little people make me smile, day in & day out. I know my Heavenly Father blessed me with them specifically to help me through these rough, teary days. I wake up the next morning and know I can go on because of them. Enjoy!