Sunday, June 30, 2013

Transcript #1

I'd asked my brother, when he was up the other day, if he also wanted to hear the recording my sisters and mother had listened to of my first appointment with the C-Dr, and he in turn wondered if there wasn't just a transcript he could read.  What?  That's too much effort! However, the more I thought about it and re-listened to the recording (which I've done more than once or twice!!) the more I decided it would be worth sharing, if for nothing more than as an educational tool to others. Remember this is just the starting point so it's good, basic, background information of NHL and possible treatment options, or not. Sit back and get comfortable.  There are a few spots I've edited out small pieces of useless conversation with brackets [...] or inserted some clarifying information, also in brackets, but for the most part here is 15 minutes that cost me a lot of $$$ but is free to you. Well, except for your investment of time. Until I find the appropriate disclaimer please understand I expect this not be abused.  Thanks.


 C-DR:  So, Lymphomas. Cancers of white blood cells called lymphocytes. No one is really quite sure why lymphomas occur. If you look at other types of cancer like lung cancer: smoking; breast cancer: having breasts, being a woman; you know we can find out certain risk factors for those types of things. The thought process is with lymphomas, perhaps there is some sort of infectious or inflammatory sort of stimulus to your immune system which causes some lymphocytes to increase, and one of those lymphocytes has got a change in its wiring. It’s got something a little different that makes it clone itself over and over and over and over again, and the clone cell is really the hallmark of most cancers. So once that stimulus goes away the other cells kind of contract and go back to their normal housekeeping sort of status but this one cell that had changed its wiring up, just keeps cloning itself over and over and over. And sometimes lymphocytes, they circulate in your blood, they live inside lymph nodes and come from your bone marrow. So depending on where the abnormal cells are would depend on what kind of symptoms you have. The most common thing is for people to have a swollen lymph node, you know, and say that it doesn't really hurt but its kinda been there and it’s just kinda odd that it’s there and they usually go through a course of antibiotics or so and it just doesn't get better and then they get a scan and they get a biopsy, just exactly as you've done.
 
 So, when you talk about these lymphomas, again there’s Hodgkins and Non-Hodgkins.  This [yours] is a Non-Hodgkins lymphoma and for one to say they’re better or worse that’s not always the case. They’re different. They’re just different is all. So Hodgkins Lymphoma usually occurs in people in their teens, 20’s, early 30’s and can occur again later in life, early 60’s or so. Non-Hodgkins Lymphoma can occur across the spectrum of ages from childhood to adult. This [yours] is usually one that occurs in older patients. There are three kinds of ways, or four really, broad categories to put Non-Hodgkins Lymphoma into. Because, there are more types of Non-Hodgkins Lymphoma than you can shake a stick at. There’s Follicular, there something called Mantle cell, there’s something called a Lymphoblastic, there’s a Diffuse large B-cell. There’s lots and lots of different kinds of Non-Hodgkins Lymphoma’s. But the way you think of them: slow growing, intermediate growing, fast growing, and very fast growing. So the very fast growing ones are kind of like leukemia’s, really what we would call acute leukemia’s. They've come from nothing to causing a world of symptoms within a few weeks, and if they’re not treated right away people die within a month or so of that. The fast growing ones are ones that usually occur and then need treatment within a few months. And then the slow growing ones could have been there for a long period of time and nobody ever knew it until a lymph node popped up or something popped up and someone looked at it said, hey, this is abnormal let’s investigate it and then they found it out, because people can live with those without symptoms or problems for many years. The intermediate ones are somewhere in between those ranges. Follicular lymphomas [what I have] are generally considered to be slow or intermediate growing ones. With this one [yours] being a grade 2/3 [pathology report finding, this is a ‘grade’ not a ‘stage’] it’s really kind of on the borderline between a slow to intermediate type of growth. 

So, the important part about figuring out where to go from here always involves doing what’s called a “staging” process. Staging means that we look at your whole body and we decide where this cancer is located. We've obviously cut out this spot in your neck and we know that that lymph node there was involved, but because lymphomas are really kind of liquid tumors involving these abnormal lymphocytes they could involve other lymph nodes. They could be inside the bone marrow. Very rarely they could spread to other organs like your lungs or liver or some places like that. When I examined you I can’t feel any lymph nodes over on either side of your neck really at this point, there’s still a little swelling left there [from the surgery]. I can’t feel any under your arms. Your spleen is also a giant lymph node. I can’t completely feel that, […] but it’s not obviously enlarged when I push there. So what we tend to do then is get some laboratory, look at a blood count, look at something called an LDH and then we get some scans to look at your whole body.

Probably the best way to do that right now is with a scan called a PET scan. What a PET scan does is they inject you, through your vein with a kind of sugar. It’s a fluoridated sugar, it’s got a little fluoride molecule on there. And that sugar is taken up by cells that are dividing quickly in your body. If you had a cut somewhere those cells are turning over. If you had an infection in your skin somewhere those cells are turning over, and pneumonia, something like that, and cancer cells because cancer cells are dividing more quickly than normal cells are. That’s the hallmark of that cloned process. They pick up that sugar and you do a scan and then you look at it after the sugar’s been given and it shows up as a bright spot on your body.  And they do a CAT scan and they correlate that CAT scan with where the bright spots are showing up and they can determine very accurately where all the cancer is located. So, we’ll do a PET scan to look at all these other lymph node spots. 

The other thing that we do is a bone marrow biopsy. A bone marrow biopsy is a little harder. What they do there is numb up an area in your pelvic bone, put a needle into that spot, take out a liquid sample of bone marrow and then a solid core of the bone itself. They look at that under a microscope and they determine if there are some of these cloned lymphocytes present.  For some people I just do that here in the room because it’s just a little numbing medicine and it’s really not that big of a deal.  For other people where perhaps it’s a little harder to find that spot […] I have them go and do it with some sedation medicine.  Not general anesthesia, but a little bit of something to make you sleepy so that you don’t remember it. Then they put you under a CT scanner so they can figure out exactly where that needle needs to go. Probably would be the best way to do it for you. A little sedation. Under a CT scanner. Guide exactly where it needs to go. It’s very quick. It’d take a few minutes really to do once they've got everything positioned correctly. And it wouldn't hurt you because you’d be ‘out’, you wouldn't remember it. A little sore the next day. Okay?

MM: that might be good.

C-DR:  You’ll do just fine on that. So that’s a “staging.” We try to determine where else the cancer might be located in your body and in the bone marrow. We’ll look at those things. Then the question will come up: What treatment should we give you. Now the question with that is a very interesting one because with fast growing lymphomas, in this fast and very fast growing ones, we can cure those if treated appropriately right up front. They’re growing quickly, they respond quickly to our treatments which are chemotherapy treatments, therefore they die off quickly and because those cells are always in a growth sort of growth phase, chemotherapy affecting those cells that are dividing quicker and growing quicker, we kill them off, we get rid of them. The slower growing ones we often times will say, “Well because they might grow, and they might not,  they might sit there for a while and then they might grow, you don’t necessarily hit them at the right time to kill all of them off.” So sometimes we don’t cure those but people can live for decades even with having that cancer. So sometimes, depending on if we look and we find it only in one spot or if we find it in lots of spots but we don’t really have symptoms from it the right thing to do oftentimes is to follow that along and not even give any treatment for it for a period of time. There are patients that…

MM:  that’s the Watchful Waiting I read about.

C-Dr:  Yes. There are patients, that depending on how healthy they are and depending on what symptoms they have from the lymphoma they might die of something unrelated to that and might never need treatment for it. You know, I have one patient that came to me in his 80’s. He had a Follicular lymphoma along his neck here and he has a bad heart and bad lungs and heart attacks and things like this. And he got treated by another Doc and then came to see me because he wasn't, just wasn't doing very well. And so I said we’re just not going to treat this. That was four years ago. And he’s now about 86. And he’s still as sick as he always was. But it’s not from any lymphoma type of thing. So sometimes the right thing to do is to do nothing.  Okay?

MM:  That sounds so strange.

C-Dr:  And it sounds very odd and it sounds very strange but the issue is I have loads of treatment for this. The problem is that all those treatments typically will have side effects. And if they can’t take the disease away completely then the goal would be not to expose you to those side effects unless there’s a real good reason to do that.

So, first step: find the stage. Second step: see if this is causing particular problems. There are occasions, most of these Follicular lymphomas we find them at a stage 3 or a stage 4 because they are slower growing and because you don’t know they are there until they show up like that. There are rare times when we might find it in just one spot. If you just find it in one spot then sometimes doing a little radiation treatment to that can be curative. Sometimes if it’s in that more advanced stage then I just kind of watch along and see what kind of symptoms people have and follow it carefully. But I think until we know all of that, you know, I won’t know how to counsel you about that. For right now, just off what you’re telling me you don’t really having a lot of symptoms from this. A lot of people when they show up with a very advanced lymphoma, unexplained weight loss, fevers, sweats at night. I've had patients that waited so long that they come in, they've got their lungs filled with fluid, they've got lymph nodes around here, they got lymph nodes showing up under the skin. Even patients like that with lymphomas I treat and they get a lot better. So, lymphomas are very, very treatable diseases.

Sometimes we treat with what’s called immunotherapy. What that is are antibodies geared towards particular proteins found on the lymphoma cells. They don’t have the same side effects as chemotherapy does like losing your hair and feeling really tired. It’s just Infusions that we give. Sometimes we treat that with immunotherapy plus chemotherapy, so, medicines that go throughout your whole body to kill off those cells. Sometimes a radiation is added in there and sometimes again we don’t do any treatment right up front. 

The other thing about not giving treatment right up front is that it allows medical science to kind of come out with new things that can treat even better with less side effects. The medicine that we use a lot now, called Rituxan, really started to come into play around the year 2000 or so and these days it was a huge step forward in lymphoma. And it’s used for lymphoma plus a lot of other diseases. We didn't have that in the past. There’s a newer kind of chemotherapy medicine called Bendamustine that we didn't have when I finished my training 10 years ago. If you look in the, well, on internet today, on CNN, I was kinda reading this morning. I had already known about this drug but there’s an oral pill used for people with a kind of lymphoma called CLL and another called Mantle cell lymphoma, that has very few side effects that’s been used in patients that have gone through all their other options and has an amazing sort of responses in stability and keeping people alive two years and longer when these patients may have had diseases that would have killed them within 3 or 4 months. So, that medicine is kind of on the horizon so we’re always making some strides forward in our treatments.

So if I say to you, hey listen, I don’t think we need to do treatment right now, and we end up treading water for 2 years, 4 years or however long we can do that and watch and wait, maybe during that time they come out with something that’s a huge breakthrough again that has very few side effects that works very well and then we can say, you know what, we were really smart not doing anything back then. Let’s give you this really good drug now, when you need it, and then we’ll go from there. So, the thing I want to stress for you right now is that, loads and loads of treatment. This is not a diagnosis that I’m expecting that will take your life within the next year or two or three.  This is something…

MM:  Good.  This was not in my plan.

C-Dr:  Exactly.  …that you can live with without treatment. This is something we can treat and people can often times live a decade or longer with the disease in remission. So there are lots of really good treatments out there for this, it’s just trying to decide when it’s right to give it to you, when it’s needed, and what that treatment might be from low intensity to higher intensity sort of treatments.

MM:  Depending on these first tests.

C-Dr:  Exactly, and that’s why we have to do this up front, the right way to figure out what we’re dealing with. Okay?  Questions?

MM:  No, but they’ll be coming.

C-Dr:  They’ll come. Write them all down. I’ll see you back once all these tests are done and I’ll go through all of them and we’ll answer more questions and come up with a plan and then at that point if I haven’t answered those other questions we’ll go over them too.

[…]

C-Dr: You come in and you got all this stress and stuff on your mind. It’s good that you recorded it. Half of it will be gone by the time you walk out the door, half of it will be gone by the time you get home. So you can re-visit it with that [recording].
The internet does have some good resources on there. There’s also some quack type stuff. But if you go to any really, sort of known institution, larger, Mayo Clinic, National Institutes of Health, National Cancer Institute, any large university; any of those websites their information will be good. Anyone that says, “Hey if you buy this special grape juice from me for $1000 and it will fix you” then just say okay thanks and walk away from it. Okay? Definitely a treatable disease. Definitely one that you can live with. You’re gonna do okay. We’re gonna get you through all of this and you’ll be coming back and see us.

[…]

C-Dr:  It has an effect on you whether you consciously realize that or not.


<End of relevant information.>



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Saturday, June 29, 2013

Today's worries










The Heat (yowzer!)

The lawn mower that may, or may not, work long enough to get all the lawn cut before it's picked up by the repair shop tonight.

The Primary Sharing Time that I do each 5th Sunday...tomorrow.

The cost of running the A/C day and night in this heat wave.

The dry, now yellow, patches of lawn I discover due to malfunctioning sprinklers.

I'm out of toilet bowl cleaner--how did that happen?


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Friday, June 28, 2013

CT guided Bone Marrow Aspiration/Biopsy

seeing this a few days ago...
...for internet search "bone marrow biopsy" did little to ease my mind!
As it turns out, I believe there is a hammer missing from this picture.

Doing a bone marrow aspiration and biopsy, along with the previous PET scan, is part of the 'staging' process to help the C-Dr determine my treatment plan.

Due to the 'extra tissue' (too much gluteus maximus on my bodyus) my C-Dr ordered a CT guided Bone Marrow Biopsy [person rests in a CT-scanner and the scanner's images help doctors determine the exact position of the needle in the targeted area] which is done at a hospital or outpatient center.  Usually he says most bone marrow biopsy's he can do in his office. An additional advantage is they can put you under light sedation in the hospital/outpatient setting.

Check-in time was 9:45am at IMC but we got there a little early.  Then filled out more paperwork, again.  I swear, I've filled out the same forms or just a slight variation of the same forms each place I go to. It's getting old. But then, so am I.  Well, there was something new for me to answer on one of these forms--for the first time the question was asked: "Have you ever been diagnosed with cancer?" That was tough. My new reality. Anyway, about 10:30 or so we're (my youngest sister is today's driver) escorted back to the curtained cubicle where street clothes are exchanged for glamorous over-sized too-long scrub pants and the infamous hospital gown.  Vitals are taken and my severe case of white coat BP isn't so severe today on the first reading. Each subsequent read is lower to finally a normal range.  Maybe I'm getting used to it?  Then, for as many IV's and blood draws as I've had in the past 6 weeks this is the first time someone can't find a vein on the first try. We joked about it being his 2nd day on the job but at a certain point I wondered if it just might be true.  After 30 minutes, with the help of an ultrasound machine (relying on technology instead of experience?) a suitable vein was found. Finally. Then, more wires attached to my body to monitor heart and finally the IV bag is hung up and added to the mix.
So many tubes and wires all over the place! Blood was also drawn for labs they needed to do and then a RN came in and went over the procedure a bit and gave me the name of another nurse who would actually be there during the procedure.  Then more wait.  And wait.  And wait.  Then the Dr, an Interventional Radiologist, who will be doing the procedure came in and introduced himself and also explained the procedure a bit more, some Q&A, and he has another release form for me to sign.  Then he disappears and we wait some more.
A little before 12noon the RN comes to walk me to the room with the CT scanner--only to discover when we get there that old linens are still on the patient table (part that slides in and out of the CT scanner tube) so I stand around, trying to hold up the too big scrub pants and also holding my IV solution bag, while he searches for clean linens and does a little housekeeping.  Really?!

Then it's tummy side down on the table and the other RN puts a nice warm blanket over me. Ahhhhh.
All my wires are hooked up to another monitoring machine and the first BP reading is a bit high and I go through the 'severe white coat' explanation and she says "So we shouldn't panic when your BP drops?" Next reading is significantly better and as we look at it I smile and say "See?!" and continue to watch as each following reading is more normal. Watching that little machine and seeing how I could affect its reading of respiration rate and oxygen saturation was kinda fun while they fiddled around doing other prep stuff.  If I took a really deep breath the yellow line and number changed and then the blue O2 sat number was also fun to tweak a bit. I was bored at this point, but also trying to occupy my mind on something other than what was coming up. Can you tell?  Finally they slide me in and out of the tube to get the bone location they needed. Then in went the needle with some numbing solution. I think this is the point where I have about a 20 minute gap in time and it's probably a good thing because what I remember feeling next is an intense and incredible pressure where they're working (imagine an elephant stepping on you just below your waist), then hear and feel what I swear is a hammer banging something into my hip bone and then a grating, crushing kind of noise and feeling.  Are ya'll squeamish yet? Not sure I want to know what was happening during that other 20 minutes.
When they're done I roll over from the table to my bed and they wheel me back to the curtained cubicle I'd walked out of about an hour before. My sister was still there reading a book. Wires and stuff hooked back up and first RN comes in every 10 minutes or so checking on me and biopsy location. BP reading are also well within the normal range. Yay.  Not long after he offered me something to drink and I decided I'd earned a Dr. Pepper! and along with some water came a sack lunch with small dark wheat roll w/roast beef & lettuce & tomato & condiments, along with chips and melon and juice and cookies. My sister ate the chips and Lorna Doone's. The sandwich and melon was yummy. Of course I hadn't eaten since dinner the night before so anything would have been good.
I think it was a little after 3:00pm when my release instructions and cautionary warnings were given and papers signed.  The remainder of today is to be rest and no exertion; tomorrow kind of back to normal but for next 7 days I can't lift anything more than 10 pounds! Sheesh, a gallon of milk is just over 8 pounds (under the limit) but not by much. This will severely curtail my normal activities. I passed on the wheelchair ride and almost look forward to the 100 degrees outside which means I'm out of that building!

Want a closer look?
Me neither.


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Thursday, June 27, 2013

Ponderings

pon·der

  [pon-der]
verb (used without object)
1.
to consider something deeply and thoroughly; meditate (often followed by over  or upon  ).
verb (used with object)
2.
to weigh carefully in the mind; consider thoughtfully: He pondered his 
next words thoroughly.
Origin: 
1300-50; Middle English pondren  < Middle French ponderer  < Latin ponderāre  to ponder, weigh; akin topendēre  to be suspended, hang


What did I 'ponder' about 3 months ago?  6 months ago?  1 year ago?
It certainly must have been different than what I 'ponder' about now.

Wednesday, June 26, 2013

Eviction

So my brother came up on Monday, his day off, and fixed up the hole in the corner of the patio soffit that blew off in the big East Wind a while (quite a while) ago.  A family of starlings had discovered the hole last year and apparently because starlings only nest in cavities (vents, attics, soffits, etc.) this was the perfect home for them! One batch of youngin's has already been raised but time ran out for them this week.  They've provided some entertainment for my mother, but she has also been anxious to get the hole fixed.  Anyway, when he was up here on Mother's Day (back when only I knew there was a lump under my jaw) my brother said he'd come up sometime and make the repair.  Well, his day off, and the repair, coincided with my 'couch potato day' so even though I probably made more trips than I should have up and down the back porch stairs and out to the garages a few times too many, I still felt bad not being able to assist him more.

This is the nest that was pulled out.
My flip-flops/big toe provide a size comparison.
Three little eggs.
Two were 'liquidy' but got scrambled when I shook them. The third was either non-viable or maybe had moved on to the next stage.


My brother inherited our Dad's mechanical and Mr FixIt gifts along with ingenuity for solving odd problems.  He arrived before I got showered and by the time I was dressed and outside, this is what I saw:
One brother.
One hole being fixed.
One shop-vac hanging from a ladder.
Priceless.
Apparently to clean out all the nest-making materials required one hand to hold a shop-vac AND the other hand to hold the shop-vac hose AND the other hand...oh, wait, there is no other hand.  So, rope was found and an 'assistant ladder' was called in to hold the shop-vac.  Genius.

Remember that scene in True Lies where Tom Arnold hides behind the lamppost while being shot at by the bad guys? And survives!  Well, for some odd reason when I saw this, it struck me funny and reminded me of that scene.  Fortunately the only one "shooting" here was me.

After the repair had been made I went into the house and a bit later hear a thuddy crash.  By the time I got outside the ladder had been put aside somewhere and this is what I saw:
Apparently the wrong piece of the rope holding the shop-vac to the ladder was loosened and the vac released itself unexpectedly and dropped to the ground.  No damage done, other than maybe the grass (and my brother's pride).

After he took my mother to her favorite drive-thru for lunch, and made a stop at the hardware store, my good brother decided to clean up those dead branches on the gamble oak tree you've seen in the background. Right or wrong, I usually wait until they are 2 years dead, and very brittle, then take my long handled rake and hook the business end of that rake over the limb and pull--they come right down, often shattering into smaller pieces.  Newly dead branches don't come down quite so easily but now I won't have to worry about that for a while.
No longer needed for picking cherries, one of our old 12-foot orchard ladders came in quite handy.  And yes, this is why everyone with a yard, especially with multiple ground levels, needs a tripod ladder.  (BTW, I have a few for sale!  $10 a foot is the used-ladder price. Sorry, couldn't resist a sales pitch with the perfect picture.)

Anyway, it was a great day and the weather was not too hot for physical work.  Much thanks to a wonderful brother who took his day off to work here instead of his own home.

As for the starlings.  Their service for eating grubs and insects from around the yard has been noted, but their lease has expired!


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Tuesday, June 25, 2013

PET scan

Yup.  That's about right.

Doing a PET scan, along with upcoming bone marrow biopsy, is part of the 'staging' process to help the C-Dr determine my treatment plan. This is a combination scan as a CT scan is also done at the same time.

First the IV for an injection of FDG (flourodeoxyglucose - a radioactive drug).  Then after 45 minutes or so resting (in an uncomfortable la-z-boy type chair) to allow the drug to seep through my body it's time for a ride in the 'tube' with a pillow under my head, arms stretched out behind my head and a support under my knees.  Exactly 22 minutes later I'm finished...with this procedure anyway.



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Monday, June 24, 2013

Couch Potato Day

Mon. June 24, 2013
>> Today is 'prep day' for tomorrow's PET scan.  When I was handed a piece of paper at the C-Dr's office and told "Here are your prep instructions for the scan", I gotta say my thoughts went immediately to what a lot of us associate with 'prep' -in a bad way- and that's what you go through before a colonoscopy.  Thankfully this is different.  Very different.  The diet protocol today is high protein (meats, eggs, cheese, leafy green salads, etc.) and low carbohydrates (no pasta, white bread tortillas, sugar, etc.); lots and lots of water.  Also, 'NO Exercise 24 hours prior and limit activity the day before and the day of the scan' or as told to me when I asked just how limited activity should be: "You lay on the couch and watch TV all day."  Hey, I can do that!




>> And...the weird part? I can't believe how tired I got doing nothing!


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Sunday, June 23, 2013

Sharing

Fri. June 21, 2013

>> This afternoon I tried to get the file of my smartphone recording at the 'cancer Dr' office to transfer to my PC but was unsuccessful.  There's a way I'm sure, but it will have to happen when I'm not in such a rush.
>> For the past several years, every Friday night, my sisters and our mother and I get together and do scrapbooking stuff.  My two sisters are waaaay more into the scrapbook stuff than me but it's been good family time.
>> Tonight, after we ate our dinner, I replayed the recording of the conversation the C-Dr and I had yesterday.  Much easier than trying to remember and repeat what he said.  Not a lot of questions from the group, but I think the C-Dr's excellent explanation to me of where I'm at and where we're headed was sufficient for the moment.  There was one glitch, and the reason I was trying to get the recording to my PC.  Even at my phone's loudest volume Mom couldn't hear what the C-Dr was saying so she got her own replay afterward and listened with the speaker up to her ear...and the rest of us heard it again too.  Not necessarily a bad thing (hearing twice what C-Dr said, that is).


>> Since my visit with C-Dr on Thursday I've also decided that only family will be 'in' on this until my return visit to him when there will be more information, especially the stage of the NHL and future treatment options.  I'm so concerned about the ease with which so many people engage in speculating, gossiping and rumor-mongering, especially when it comes to bad news and I guess want as much control over that as possible.  My family has agreed to keep this in the family at the moment and I appreciate that.

'cancer Dr.' appointment

Thur. June 20, 2013
>> Had my first appointment at the 'cancer Dr' (C-Dr) office today.
>> Patient Advocate.  My first stop was to meet my Patient Advocate who is the person that will help me in many ways throughout this new chapter of my life.  They do a lot of things but perhaps one of the most reassuring things I heard today is their responsibility for the "full coordination of insurance benefits and resources" and to "ensure authorization for all services prior to treatment."  I can't put into words how much of a relief that is.  I've always thought I had good insurance coverage but in reading through my insurance handbook last week I lost track of how many times it mentioned that we (policy holders) are responsible for: making sure we use contract providers (which I knew); making sure that pre-authorization of "some services" is done or benefits will be declined or reduced (there's a list of 10 things we need to tell the insurance company each time we call for pre-authorization!) and 15 pages listing all services!  Ultimately I'm still responsible for making sure it is still done but as we talked a bit more I was impressed with how much they knew about my medical plan (pre-auth needs and also at which facilities my insurance will pay for tests & treatments) and had already been done with my insurance company for upcoming procedures.  All I can say is this Patient Advocate is a huge plus.
>> After that the next stop was to get all the vitals stuff done.  The vitals guy measured my height (I've shrunk since it was last done over 15 years ago) and my weight (that's shrunk too, especially the past 2 weeks--too worried to eat and lost my appetite--not altogether a bad thing at my weight!).  Also took my temperature and oxygen level and, no surprise, my 'white coat BP' problem was in high gear--maybe I'll get used to it now and get it down to the same normal levels I have when doing BP at home.  And, of course, they siphoned a bunch of blood.
>> C-Dr.  From there my next stop was to finally met my 'cancer Dr' and I was soon impressed.  He reminded me in many ways of the primary care physician I've had for over 30 years - and that's a good thing. Excellent 'bedside manner'. We then reviewed my medical history and family medical history from all those forms I'd filled in.  He too was surprised I had all my original body parts (up until the lymph node removal) and seemed in good health, well, other than the reason I was there, and the obvious weight issue he and I agreed on.  He calmly explained more about my variety of Non-Hodgkins Lymphoma (NHL).  Oh, just after he started I asked him if I could record the conversation with my new smartphone and he said yes.  So glad for that as he went through a lot of information, and about 20 minutes into it said by the time I got to my car I'd only remember about half of what he said and by the time I got home only half of that, and then pointed to my phone and said having that would help.  He was so right!  He then explained the next steps are to 'stage' my NHL by doing a few procedures to determine the source of the cancer cells and... (see, I've forgotten already the best way to say the next piece but I'll get it corrected) _____________.  The staging and location of the active cancer must be determined before the treatment plan can be decided.  He then poked and prodded lymph node areas and my spleen (similar structure to a large lymph node). He also encouraged me to write down any questions I had and bring them at each appointment. My recent smartphone purchase may have been a good thing now.  He then explained the next step is two procedures that need to be done:  1) a PET [Positron Emission Tomography] scan; 2) a Bone Marrow aspiration and biopsy.
>> After that it was back to my Patient Advocate who called each hospital where the two procedures will be done and got the scheduling completed while I was there.  She told me she had already checked with my insurance for the pre-authorization and made sure each hospital was 'covered' for each procedure.  Nice.
>> Both procedures will be done in this next week.
>> Next appt with C-Dr scheduled the following week to discuss test results and what is next.
>> Best words from C-Dr today:  "Definitely a treatable disease."

I think I'm too wordy.

Lymphoma cancer is represented by the Lime Green ribbon.


Tuesday, June 18, 2013

Time Line: Lump to Diagnosis

first part of April 2013.
>> Laying on couch watching TV and feel a lump under my left jaw.  No matching mass on the right side.  Maybe it's just a swollen gland that will go away?  Keep checking every few days...still there.

April 16, 2013
>> Ugh. Lump still there.  Call my regular family physician (who's always booked up solid) and learn no appointment is available until the end of May.  Set appointment.

end of April 2013
>> Double-Ugh. Lump is still there, although not growing in size, but I'm getting nervous about waiting another month before getting it looked at.  Do the social media thing and hit Facebook asking if anyone can recommend a good family practice physician and a few names are suggested.

Thur. May 9, 2013
>> After pondering Dr options an appointment with new (to me) family practice Dr. was setup for today.  As his nurse gathers my information she seems surprised I still have all my original body parts, have had no surgeries, and except for my severe case of 'white coat' during BP (blood pressure) readings and the obvious weight problem, have been healthy.  At first Dr thinks it may be a blocked saliva gland, but then after probing around a bit more decides it's a swollen lymph node--No, I haven't been sick lately; No, I haven't had any fevers; No, I haven't had any infections; No, I haven't had any toothaches, etc.  First treatment option is a prescription for antibiotics in case it's just an infection and a return to the Dr in five days to re-evaluate.

Tue. May 14, 2013
>> Both Dr and I see no change in swollen lymph node.  Dr schedules a CT scan for this afternoon.
>> Well, here we go.
>> During the CT scan process I'm thinking about my nephew who has just graduated with some kind of a Radiology degree (sorry I don't have specifics) and I'm guessing this is what he's been learning and doing. Imagining he is the person doing this, and hoping he inserts IV's as wonderfully as this guy does, keeps my mind occupied and eventually it's all done.  Results will be sent to my new Dr.

Sat. May 16, 2013
>> Dr. calls and says CT scan shows an enlarged lymph node and he's referring me to an ENT.  Within an hour I get a phone call that an appt w/ENT is set for May 21st.

Mon. May 20, 2013
>> Over the weekend I receive a Summons for Jury Service indicating my term is from May 21st to 23rd but need to call on 20th, after 4pm to see if I need to show up on 21st.  Make the call to recorded message and am told to report to the District Court at 8:30am the next morning.  Oh, great.  Call the clinic and explain why I need to change Dr appt and it's rescheduled to Friday. As it turns out I was selected as one of the jurors and spend 2 days doing my civic duty.



Fri. May 24, 2013
>> After explaining ("Why are you here?") ENT Dr and I look at the CT scan as he tries to explain what he's seeing (how can they 'see' anything?!) but is not sure he's seeing same thing the radiology person did.  So, in comes the ultrasound machine and after gooping up my neck and jaw ENT does see a large fluid filled mass. After probing around he decides to do a needle biopsy and gets some fluid out but would prefer another sample using a larger needle "because you did so good, do you mind?"  Only after I said okay did I take a peek at the size of the needle he wanted to use.  I survived.  Somehow.
>> Tells me lab reports will likely just show lymphocytes, because that's what's in lymph nodes, but he's going to get me scheduled in to the surgical center for removal of lymph node and get a proper biopsy.  Warns me there is a nerve affecting mouth that runs along the area he needs to access and hopes that nerve can be avoided.


Wed. June 5, 2013
>> Pre-op appointment goes well.  ENT Dr confirms pathology found lymphocytes but nothing suspicious in the sample they received.  He explains a bit about worst-case-scenario and the two different types of cancerous lymphomas but says only pathology can determine result.  He also says if he cannot get entire node removed (because of nerve) he'll take a frozen section but we're both hoping he only needs to 'go in' once and not have to go back later to remove the rest if report is bad.  In other pre-op evaluation ENT Dr is also surprised I have all my original body parts, no prior surgeries, etc. Oh, and this surgery will be done under a general anesthesia which I've never had. One more thing to worry about.



Mon. June 10, 2013
>> Survived the anesthesia!
>> On the way home my driver/chauffeur sister says ENT told her what he removed looked suspicious (or similar type scary words).
>> LOVE Lortab! Afternoon spent watching TV.
>> A good night's sleep.  Thanks Lortab!

Tue. June 11, 2013
>> Love Lortab!
>> Today, a different driver/chauffeur sister takes me (ya, the Lortab affect) for return to ENT to have drain tube removed.  After his nurse took it out she asked if I wanted to see it.  Silly me.  I said yes.  Good grief!!  The 1/8" of tube you could see on the outside of my neck was nearly 3" long.  ;-) Lortab.
>> ENT Dr tells me he was able to remove the entire lymph node (whew), but he can see there is some minor nerve damage to mouth. There is? Sure enough, as I look in the mirror and smile it's a very lopsided smile but while prognosis is that it should slowly improve he may want to see me again in a month.
>> As for the lymph node he tells me what he told my sister and says the pathology report will tell him for certain what it is but is taking a proactive route and asks his nurse to get me an appointment with an oncologist he highly recommends.  I agree with what she said to me: "I'll bet that's not the news you wanted to hear is it?"
>> Love Lortab!
>> Nurse called me the next day and my appointment with 'cancer Dr' is June 20th.

Thu. June 13, 2013
>> Phone call this morning from office of 'cancer Dr'.  They're requesting my email to send me information so I can start filling out all the forms needed for my file and prior to first visit.  Wait all day but no email from them.

Fri. June 14, 2013 - Flag Day
>> Call 'cancer Dr' office and they had my email wrong.  Forms resent.
>> After being on pins and needles for several days while waiting...ENT Dr calls late afternoon.  He has pathology report and it shows positive for Non-Hodgkins Lymphoma. Cancer.  I'll get full copy of report at my appt on Tuesday.
>> It's a red-flag day now.

June 16-19, 2013
>> weekend spent filling out medical and personal information forms -- with information I'd expect, and some information I wouldn't.
>> So grateful for Stake Conference this weekend and with no regular Sunday meetings I hide out at home and I'm extremely glad there's no need to explain what happened to my neck, which is still covered in tape strips covering up dried blood and holding the incision closed.
>> Have decided to notify my immediate family of the diagnosis once I have the full report, and that also provides me time to come to grips with a life-changing...well, change.


Tue. June 18, 2013
>> Post-op appointment with ENT.  He removes the tape over the incision and skin has healed up completely.  Says he can see improvement in my smile so a previously suggested follow-up with him in one month not necessary, unless improvement stops.
>> I get that hard copy of the pathology report.  Tell the ENT Dr I appreciate all he has done but it must be hard delivering such news and he says while it's part of his job it is difficult when he has to tell people as nice as me.  My thoughts are he says that to everyone but I needed that little boost as it allows me to leave the office without totally crumbling.
>> Out to the car where I read through entire pathology report and finally seeing "Non-Hodgkins Lymphoma" in print is a stark reality check.  The rest of the report? Gibberish to me.
>> Next Step: notification to family (Mom, siblings, nieces & nephews) of the results.