Magic Elixir

I'm sure I would have stopped breastfeeding before Brennan went to college, but to be forced to stop breastfeeding because of cancer really ........ blows. Sorry, but I can't think of a more accurate word than that one. My last Breastfeeding session
(I found out two minutes ago) was this morning. umph!

I think "umph" and "blows" are the words of the moment.

Now, my dad and I are on our way to get my five Pulmonary Function Tests. It sounds like they will be relatively painless. Phewwww. More to come .....

Post Surgery Number 2

I was a wreck on Wednesday night. I thought up a number of things that could go wrong during surgery number 2. Some were actual concerns, but most were made up by the over-active hamster in my head.

Imagine my surprise when we checked in for surgery at Northwestern on Thursday morning and my patient number was 33. Yes ... it's my lucky number. At that very moment, I decided not to go running from the facility as previously planned and instead to take a deep breath and smile. I was going to be alright. This is a picture of me with my dashing, soulful, amazing, supportive hubby .. my wingman, my medical advocate, my love .... AND the piece of paper that was given to us when we checked in displaying my lucky number!



This is me right before surgery trying to stay warm. Eric and I were experts the second time around.


AND this is me post surgery with my Au Bon Pan Arizona Chicken Sandwich with extra extra sauce! YUM! They did both the Port a Cath insertion and the Bone Marrow Biopsy. Not only did the doctors do a significant amount of work to coordinate both teams (the surgeon did the Port and the Oncology team did the Bone Marrow), but my Oncologist actually came to the surgery! That's unheard of. I think he wanted to make sure everything went well since I fainted during the first Bone Marrow. My ocologist rocks! Merry Christmas everyone!!!!!!!!!!!!!!!!!!!!!!!

Here's a pic of me on December 3rd in the surgical prep room before the biopsy. (We're going back to a room like this today.)


Here's the end result of that biopsy - my scar! We visited the surgeon on Monday to make sure I was healing. You can see my scar in th photo up by my neck. It's not such a bad war wound to have.



This is me with my IV for the MUGA and the PET tests. Next to the bone marrow biopsy, these tests were like eating a snow cone at Cedar Point (best amusement park in the US; come on people!)

Today (Yes yes December 23rd) I go in for one more "minor" surgery. Enter the portacath. I'll explain more later, but basically it's a little device they put in my upper chest on my left side (they can do either side, but since the cancer is on the right...). The device makes it easier to access my veins. Basically it means that after 6 months of being stabbed with needles, I won't look like a pin cushion. AND, while I am in la la land, they will also do the bone marrow biopsy. I'm nervous about this one since they only did half of the procedure last time and I still have discomfort in my back.... but it's best to get it done. We need to know if there's cancer in my bone marrow which I don't think there is.

Anyhoot, while you're making your Christmas cookies, say a little prayer, cross your fingers ... we're hoping these little procedures are easy as christmas pie!

A blip in the road

Bone Marrow Biopsy - So, we had a blip in the road on Thursday. I was meant to go to the hospital and have three tests: a bone marrow biopsy, a MUGA, and a PET. The Nurse Practitioner was half way through the bone marrow biopsy, when I suddenly proclaimed that I was ........... going to vomit. This was proceeded by me listless on the surgical table for about 5 seconds ... yes yes ... I passed out or so I heard. It was a first for the nurse practitioner. They had to stop the procedure and bring me some orange juice. They also had to cancel my other tests.

For anyone getting a bone marrow biopsy, it's like a root canal. It happens over time. The quickest bone marrow biopsy is 30 minutes, but think of it as a 45 minute procedure. Think of it as a root canal done in your back. When they tell you that it's done in your hip, they mean your hip bone. In layman's terms, they are cutting (the tiniest) incision in your back (less then a cm). If I would have gone in there thinking root canal of the back, I would have felt better prepared. (and I wouldn't have asked "are we almost done" every 5 minutes.)

What I didn't mention in all of this was that my friend Jackie came with me, held my hand, stroked my hair, told me stories to take my mind off the procedure, wheeled me to the car in a wheel chair, carried my purse, drove me home, made sure I was in good hands at home, told me that it was going to be alright, and was just all around loving. I am truly blessed with friends who teach me all the time how to be a better friend. What a miracle.

Anyway, the fainting spell was probably a mix of nerves and the flu. I left the office very nauseous, and continued with nausea and fever for the next 24 hours. The worst part is that they were only half way done with the biopsy when I fainted, so I'll need to do it again. Ah well, this time I'll know what I'm in for. (I believe that next time they'll also give me a little something to take the edge off.)

MUGA, PET, visit with my "experienced" GP, and follow-up with the surgeon on Monday. Until then....

By the way, did you notice how close my self-diagnosis was to my actual diagnosis? You did? Me too.

They say that people love pics in blog entries, so here is one of Brennan (aka Red Beard, aka sweet potato face) a little before our lymphoma journey started. The use is gratuitous as the blog has nothing to do with this actual pic, but even if my blog entry is dull, you will have enjoyed a picture of the greatest blessing I have ever known, and one that makes every day in the battle against lymphoma one worth winning. Now on to my blog entry...

Eric here, I've been amazed by all the blessings we've received, mostly measured in the friends, family, and people that surround us. Cancer is a scary concept to have to face, especially because of the way it sneaks up on you. We were going along living our happy lives, when out of nowhere, a little lump on Kari's clavicle turns out to be a life threatening condition. Kari and I (and Brennan too, of course) had gone through our lives with pretty much zero knowledge of lymphoma, and then in the course of a week, it turned our lives upside down.

And of course with little knowledge of the disease, the mind has to work overtime to fill in the many blanks resulting from being lymphoma rookies. Enter blessing number 1, my friend George Florentine who I just saw two months ago in Boulder, prior to that the last time I saw him was about 8 years ago snowboarding in Colorado. George happened to have just completed treatment for the same form of Hodgkins that Kari has. He also wrote a blog about the experience, most of which I had read prior to our current lymphoma bout, so rather than being completely ignorant of lymphoma I had a little knowledge based on hanging out with George and reading his blog.

My read of his blog was out of concern for my friend, as the possibility of getting Hodgkins in a year is about 1 in 30,000, so it was hardly likely to touch anyone I knew. But in the moments after Kari told me what the doctor suspected (on the day before Thanksgiving), I immediately thought of my friend George and his story of his battle with lymphoma--my first thought which I took great consolation in, was that I had seen within the month with my own eyes a living, breathing funny and fitter than I'll ever be lymphoma survivor in George--and that Kari and I could get through this too.

On the fitness side, George posted all of his biking and running training times during the period of his chemo and radiation treatment, and in my inside humorous voice, I thought maybe getting Hodgkins was the best route for me to ever have a chance of competing in a triathlon. Of course now facing lymphoma up close, I've decided that I don't want to be a triathlete after all.

Within the hour after hearing the news from Kari and before talking with anyone else, I had emailed George wondering if he had any idea of what I might say to Kari or do to start the battle against lymphoma. George called me as soon as he got the message, and both Kari and I talked to him Thanksgiving eve, even as he had his geographically distributed family gathered ever so briefly for the holiday weekend.

Our discussion with George was sobering and encouraging, and one that allowed us hope and shed some personal experience on a subject that earlier that morning was unfamiliar to us and of seemingly little concern. What a difference a little lump can make, and what a difference to have the blessing of a friend willing to share of himself to help transform the fear of the unknown into something tangible and hence defeatable. George's support, and the support from friends, family, and even some random people, have been the greatest gift to me and the one that makes me both optimistic and leaves me wondering if god's hand isn't at work to put some very spectacular people in our life at the very moment needed.

PICTURES of Lymph Node Biopsy

Here is a picture of the slice of the lymph node that they took from above my collarbone. The cells circled in red are called Reed Sternberg cells; they are the cells that tell us I have Hodgkin's. The Reed Sternberg cells are only 5%ish of all the cells in the lymph node. An awesome pathologist friend took these pics for me. How wondeful is that!

Visit to Oncologist continued

We visited the oncologist… actually two oncologists on Monday. They reviewed the biopsy and CT results, gave us general Lymphoma info, talked to us about where my Lymphoma fits in, and told us what the plan was going forward. All in all, they were pretty awesome visits with two remarkable doctors. Eric and I listened diligently, took copious notes, chose which of the two doctors we were going to move forward with, and started making future appointments. One hell of a busy, stressful, relatively good day.

The CT Results Report was fun (relatively) to look at. It talked about the supraclavicular, axillary, and pectoral lymph nodes where I believe the majority of my enlarged lymph nodes are; basically this means that they are on the right side of my body above my diaphragm. There were a few small ones in my mediastinal which is behind my breast bone. If the PET doesn't uncover more cancer, these swollen lymph node locations put me in stage 2.

Like I said, it was relatively fun to read the report, but Eric and I did take issue with part of it. The report said I had a “grossly unremarkable spleen.” We were sure that my spleen would resent that comment … even if we don't know where my spleen was.

We talked about the Lymphoma info next and where I fit in. The Doctor actually told me that I was most likely in stage 2a. I was happy to hear him say it since I have been diagnosing myself as 2a for several days now. He also said that staging isn’t as important as “favorable” v. “unfavorable” Lymphoma. There are several factors that put a person into the “favorable” category. The verdict is still out on my category, but so far so good. One of the tests for favorability was the CT scan. In order to test favorable I needed all my nodes to be within 10cm. My largest is 6cm (originally I thought it was 7). We should know more on my category after the upcoming tests.

The plan is to start chemo on December 29th; most likely I will be doing it for 6 months. They will however reevaluate 2 months into the therapy by doing another PET scan. If all of the cancer has disappeared by then, we may skip radiation altogether and/or shorten the chemo by a couple months (though not many patients have chemo for less than 6 months). If the list of tests below continues to put me in the Stage 2a “favorable” category which I am currently in, then I could have a cure rate as high as 95% with the treatment (meaning after the initial treatment, 95% of patients do not have a reoccurence). If I respond well to chemo and we can avoid radiation, then I don’t have the additional risk of secondary cancers 10-30 years down the road. So, that’s really good news!

Here’s my list of tests between now and the start of chemo.

• Pulmonary Function Test - it’s a group of tests that measures the air intake and release in my lungs – one of the medications in my chemo regimen can cause lung damage


• PET scan - it can distinguish scar tissue from malignancy where the CT can’t – keep your fingers crossed that they don’t find additional cancer in an organ – they don’t think so, but it’s possible


• bone marrow biopsy - not looking forward to that one – there’s only a 1% chance that It’s in the marrow, but a positive test in the marrow will give me a ticket to stage IV.


• MUGA test - “highlights” red blood cells and watches my heart to see how many blood cells it pumps at one time - it’s determining how well my heart is functioning. Some radiation which I may not have, can affect your heart.


• Sedimentation Rate - we want this to be low to be favorable. It’s the rate that “extra” proteins in the blood bind to the red blood cells and make them “fall out” of suspension in the blood plasma – or something like that. Makes me wish I paid closer attention in Biology.
  

Then we’ve got the Pneumonia/Flu shots, the follow-up with the surgeon, and another meeting with my wonderful (and experienced) General Practicioner.

Like I said, all in all it was a good day.

Visit to the Oncologist

Ummm... wrote a HUGE blog, saved it, posted it, lost it. For some reason it disappeared. ugh. Please note that it was super funny and informative!! Now, I need to sleep. Until later.....

Cancer

Eric, Brennan and I are doing AOK. We've all but forgot about Lymphoma this weekend because it was Brennan's first birthday!!!! I can't believe it.

But, we have been forewarned - Do not underestimate Cancer/Chemo or Radiation. We'll know more Monday (dum dee dee dee - today).

I'm not a Doctor and I don't even play one on TV, but here's what I think my course of treatment will be based on nothing more than internet research and two books that I looked at this morning.

1. Do a bone marrow biopsy. It's quick. Can be painful, but more likely it'll just be a blip in the road.
2. Have a PET scan. It's not much different than a CT Scan. Why they have you do both and not just a PET I have no idea.
3. Start chemo through my veins. They can insert a port if you're doing 6 or more treatments (I think I"m doing 8). This one is really up in the air. I think 60% without a port.
4 8 rounds of chemo start before Christmas. I think I'll go in for 3.5 hours every two weeks for 4 months.
5. Then, start photon radiation for 1 month. I have a 5 by 7 cm mass by my lung which I think qualifies me for radiation which I would really rather not get. Perhaps they can do proton (v. photon aka electrons) radiation which exposes you to less radation. Radiation can cause secondary cancers ... usually 30 years down the road ... or so I think.

Now, I'm back to being Kari because I think I would make a poor doctor. So, let's see what the experts say today. I've been on edge this morning and last night.

Until tomorrow.,,,

The day after the diagnosis

Here are a couple blogs of those people who have gone down this road before me. The first is georgeflorentine.blogspot.com. George is a long-time friend of Eric's who just went through this same exact cancer earlier this year. The only difference is that he was (barely) in stage 3a and right now we believe that I am in 2a. He is now cancer free. What I love about George's blog is that he's a super healthy, fit athlete. He tried to eat vegan for much of the treatment, and he biked to chemo as often as he could. He lives in Boulder and spends a good deal of time biking in the mountains which of course I don't do here in Chicago. When I start to ask why I have this cancer, I think of George. Why does someone with such a healthy lifestyle have this cancer. And for that matter, why do so many teenagers have Hodgkin's? Yes, Hodgkin's preys upon the young and the young of heart. We're just unlucky. That's the last time you'll here me talk about "why." I'm done with the why. I'm ready for the challenge, the joy of kickin' Lymphoma butt (though you may need to remind me of this 3 months into chemo), and smelling the flowers one day at a time. May god bless our journey, teach us something new, and help us to live lives that align with god's will for us .... because I am certain something good will come from this even if we are unaware of what it is.

Here's another blog that George pointed us to. I haven't read it yet and we don't know Josh, but I believe it has more information about medication etc => josh-vs-lymphoma.blogspot.com.

Today, I went to the organic food market just down the street. I think I'd like to join an organic food coop. I also tried to buy two organic egg plants while I was there. They came to $9. I put them back on the figurative shelf.

........ until next time.

Do you know an Oncologist?

We're open for oncologist suggestions. We have an appointment with the Northwestern Research lymphoma expert as well as another private oncologist who works with several types of cancers. The expert is probably our choice. He was suggested by our GP.

Our GP by the way has done everything right! He diagnosed me immediately (Lymphoma is often misdiagnosed), he steered us to an awesome surgeon, called the surgeon directly, got us an appointment immediately, called right away with the Pathology results, steered us to the expert oncologist .... the list goes on.

What's really strange is that Eric and I have been making fun of him for years. He's over 70 (possibly way over), asks odd questions, plays with his ancient hearing aids all the time .... what an odd disguise for such a wonderful blessing!!!!! Hear, hear to wonderful doctors!

Classic Hodgkin's Lymphoma Nodular Sclerosing

So, we found out two hours ago that I have Classic Hodgkin's Lymphoma Nodular Sclerosing. It's the most common type of Hodgkin's,and it has a very high cure rate. I probably have stage 2a, but we won't know for sure until we see an oncologist on Monday. Though it is of course a bummer, it's also a relief to know and a relief that it isn't worse. I will need to go through chemo and possibly radiation; I'm fairly certain of this though we'll know more Monday.

I fully expect that each and every one of you will show your support for me and shave your heads immediately if not sooner. Please send me a picture by end of day or heck, I'll give you until the middle of next week.

Again, it's not a bad cancer to have if you have to have a cancer. It's curable!

WAITING

At the moment I am waiting for the results of the biopsy. Surgery was Friday and it's Wednesday afternoon. I just spoke with my surgeon's assistant and they don't have my results in yet. Lymphoma takes awhile to get biopsy results, so it's just another reason to think it's Lymphoma. If it was benign, we'd already have results. Waiting is hard.

So here is the run down of the last two weeks.

1. 11/22 - Found a lump above my collarbone Monday November 22nd. Called my GP (General Practisioner) and Eric's GP. My GP said that it's probably nothing and to schedule an appointment after Thanksgiving. Eric's GP squeezed me in on the Wed before Thanksgiving.
2. 11/24 - Went to Eric's GP and he almost immediately told me that I need to schedule an appointment with the surgeon right away. He thought that it was Lymphoma. I asked for odds (being the math geek that I am) and he gave me 75%
3. Thanksgiving weekend in Florida - I had a stuffed up ear and I convinced myself and those around me that it could be a middle ear infection. I called my ENT (Ear, Nose and Throat Doc) and he wasn't in on Tuesday, so it was either Monday or Wednesday. We took Monday which meant we had to buy new flights. We spend 13 hours getting home on Sunday. Brennan was the world's most amazing baby during that time. He's so perfect!
4. 11/29 - 10:30 saw ENT. He took one look and said that I needed it out right away. It's not my ear. I could just tell that he thought it was Lymphoma. Now this guy I trust (UofMer). My middle ear hopes were dashed.
5. 11/29 - Called surgeon while at ENT's office. He squeezed me in for a consult later that day. When he walked into the room, I told him that I don't think it's been around all that long ... possibly (I told the GP that it could have been 3 months, but after further consideration I changed my mind). The surgeon said - then we could probably wait a few weeks and monitor it before surgery. This was all before he felt my neck. Upon touching my neck, he said that it had to come out right away and he squeezed me in for surgery the following Friday.
6. 12/1 - Went in for a CT scan at 8:10am that the surgeon ordered. Drank Barium, had iodine squirted into a vein, was just fine.
7. 12/2 - Called the surgeon in the morning to tell him that the CT scan was completed as he had asked me to. He called back around 6:15pm to tell me that it wasn't in my abdomen, but that there were multiple swollen nodes on the right side of my body and in the center. There was a 5X7 mass (centimeters) by my lung and a couple nodes around my heart. This is where the nodes live. They won't hurt anything. It is not in my organs. There is a cyst on my liver, but this is very common (my friend - a surgeon - confirmed that).
8. 12/3 - Had easy biopsy under twilight sleep.
9. 12/8 - Haven't heard from surgeon yet (the assistant told me that the biopsy results weren't "in" yet). BUT, I talked to the GP who told me it was classic Hodgkins Lymphoma - Nodular Sclerosing. It's got a super high cure rate. Say a prayer and be grateful for the day. Let the journey begin.

New Challenge

It's funny that my last blog was about a new challenge because by golly the new challenge has found me. We don't know exactly what it is yet, but there is some reason I have swollen lymph nodes up and down the right side of my body (minus abdomen thankfully). It could be some odd desert benign disease, it's most likely lymphoma, or it could be (gulp) leukemia. Probably not a desert disease or leukemia, but if lymphoma.... which of the 30 types??? I guess this blog is to be continued.

The biopsy results should come back Wed or Thurs of next week.