Wednesday, December 29, 2010

The Process

We made it to the hospital in Tampa at 7:15 as ordered. Valets whisked our car away and we went up to Dr. Weber's office. After a brief wait we were taken back by a "nurse", vital signs were done, and we were placed in a room, waiting on the doctor to do a physical. (Went from docs who never do real physicals to one who is zealous about it!!!) After the exam Weber reiterated things we already knew about the study, including the risks and hopeful benefits, bit the bullet and told me that I could die, saying he didn't think I would, but he had to tell me that it was possible. We were not surprised, he has to tell people that, I was glad he just said it straight out and moved on.

Off to the floor that does the lab stuff. Met by two women: an older one with incredible sagging boobs which she used to prop on and a younger Hispanic one. The older was in charge (at least in her mind) though mainly focused on telling anyone who would listen (including us) that she had gotten the good deal that day as her husband was having to take their dog to the vet and especially liked to describe the dog's propensity to retch when placed in a car. Then she had fun telling me that I needed to wear a gown so that it would be easier for me to use the bed pan while having the leukophoresis done. I thought, with a max time on the machine of 3 hours...not on your life sweet cheeks. So I asked if it was ok for me to go to the bathroom, in case a specimen was needed, before the procedure started. She barely paid attention and said, 'Oh, sure.' On my return, she informed me that she needed a specimen. I just looked at her and told her that that would have to wait. The younger, who sort of seemed in training or just under the other's thumb, apologized for not having mentioned it prior to my bathroom trip, and said I could collect it after the process. Then, in bed and the older woman starts looking for veins (of which there are a zillion) on my left arm. She picks an odd one on the anterior aspect of my forearm, a strange place to choose to me, and starts scrubbing with some mumbling about placing it there so that I would be more free to move that arm, since the other could not be moved once that line was started. I'm thinking that would be more easily accomplished if she placed it in my hand, but whatever.... They have to use an 18 gauge needle so as not to damage the cells they are collecting and returning, and Brent, who was watching, reported that despite all her authority, she hit the vein she chose and proceeded to go right through it, then berated the vein for "blowing" (a term we medical people use to refer to a vein which pops when we try to run fluids through it...not when we poke a hole in it on the other side!!!) Anyhow, she gets the line on her second attempt. The younger lady starts the one on my right. Bossy woman objects to her first vein choice and I'm thinking, 'Go for the one you want, sister. Your advisor misses her picks!' But the younger lady had things going in one stick. Meanwhile, saggy booby lady, manages to berate nurse practitioners and doctors in rapid succession (both as folks not able to hold a candle to her skills and authority). When we gradually let her in on our professions, so as not to have her step any deeper into her pile, she is unfazed and says we were very quiet and not as demanding as those sorts usually are. I replied that I'd had lots of practice!

I had to be on the machine for 1 hour 15 minutes, which is pretty rapid. They will allow you to be on the machine for 3 hours, but check your sample of white cells at one hour to ascertain your rate of accrual. It's much like donating platelets. After getting rid of one of the IV's and giving them their specimen, we were off to the "research unit" where the medications are given.

We checked in at a reception desk and were given a little disk, beeper thing, like many restaurants use, which I found to be a bit disconcerting, but were called back within minutes. I discovered that since I am receiving vaccine injections as well as the anti-PD-1 infusion, I have to stay in a bed. I was looking forward to using the cushy recliner chairs...there are cubicles containing either a bed or recliner with a chair for a visitor. So, in the nurse comes for more vital signs and a tray, much like they use for jello shots in places that are much more fun and bouncy, filled with 6 carefully labeled syringes. Each contain 1 ml of what appears to be Elmer's glue.

She also brought an ice pack, for numbing purposes, that I am to apply to my leg. After she left, and I am freezing my leg, I tell Brent I don't want to use it, as it will only cause more tissue damage to freeze my skin. He just looks tired and tells me that I am much better at surgery...it's a wham bam situation with definite results. I'm thinking....what's so about that?!!!! Anyhow, I acquiesce to the ice. Later, the injections are given, in not what I would describe as a painless process. They hurt like a booger! I mention to the nurse that it does seem a bit inhumane since we add lidocaine to Rocephin (an antibiotic that really burns) injections and Emla cream (a topical numbing agent) is available for these very situations. She grins and asks, 'Are you a nurse?' 'Yes, and this is crazy!' She tells me that such recommendations are regularly brought to the table by the nurses, but Dr. Weber says 'the patients tolerate the injections ok with the ice.' Well, yeah. What other option do they have?!!!!! I'm going to have to have a talk with that man. Brent and Dr. Carr will surely remember the "talk" I had with them when I was taking care of a baby post abdominal surgery who had only benadryl ordered for pain. Yes, that was changed!!!!! Anyway, shots done. IV med given over 30 minutes and followed by 30 minutes more of plain IV fluid infused behind it. Next, 1 hour of observation with nothing happening, except vital signs taken every 15 minutes for the duration. Then, we were free to leave.

I did fine. No spasms, no fevers, no rashes. I felt tired over the next couple of days but probably no more tired than I would have been had I made the trip all the way to Tampa in a snow storm and not been given any medicines at all. My thigh was really sore at the injection sites for several days and two of the sites became red, and warm, as well as particularly tender.

But it is done. My next treatment is on Jan 14 and they will take place every other Friday until March 11 after which I presume I will be re-scaned and we will go from there. I will not have to have the leukophoresis repeated until the last visit of this session on the 11th.

A little late as an update....but there you have it! c

Monday, December 27, 2010

Bright and early

Just wondering....Why does everything in my life have to take place at the butt crack of dawn?

Here we go...........

Sunday, December 26, 2010

We're here!

Drove down to Macon as planned yesterday. Got out of the subdivision just fine thanks to Brent's snow chains. Had to stop and take them off by the time we got to the main road as the roads had been cleared there and the chains didn't like that! VERY messy the whole way with the most snow and sleet falling south of Atlanta. Had a nice dinner at the hotel of black bean soup and cheese bread which we had packed for the trip. Heck! If we're having to drive, might as well make it a ROAD TRIP! Bent got me breakfast from the little self serve bar that La Quinta has and we were on the road again. Peach trees, plucked cotton fields, pecan orchards - all looking much colder than they'd like to be. And if anyone calls out the National Guard in search of ALL the inhabitants of Michigan, Ontario, Kentucky, Indiana, or Illinois - call and tell them that I know where they are...heading south on I-75! Traffic wasn't that bad, though more than I'd thought it would be. There is a stretch before Tampa that has more billboards than any length of road I've ever noted before composed of equal parts anti-abortion messages (some of which were very bizarre) and "love" toys/adult x-rated shop ads. A strange dichotomy I thought. Once in Tampa bill boards are still incredibly prominent but tend to feature plastic surgery, dental, and law firm ads! Just thought you'd like to know!

We drove straight to Tarpon Springs. A fun but touristy part of Tampa that was settled by Greek sponge fishermen. We did a little shopping, Brent got to speak a little Greek, and then we had a good meal. (I had Greek salad, roasted potatoes and shrimp, while Brent had what they call farmer's salad and roasted octopus.) Very nice!

We are now back at the same hotel we used on our last trip which is only a few miles from the hospital. Have to be there at 7:15. Better get some sleep. By the way, am posting via wifi on my new iPad that Brent and the kids got me for Christmas! How cool is that?

Much love - c

Saturday, December 25, 2010

Merry Christmas!

So....awakened to 3 or so inches of snow, more falling, and 100's of flights being cancelled in Atlanta. After breakfast the kids are busy clearing the drive, Brent and our dear friend and neighbor, Les, are putting snow chains on the tires of Brent's car and I'm making a pot of soup for the kids in case of loss of power due to the icing that often follows snows up here. Fearing that our flight tomorrow will be cancelled anyway and the roads being worse in the am, Brent starts making plan number 9,010! Turns out Brent's work tonight (from 6p - 1am) gets cancelled since the manager doesn't think that nurses and front desk staff will be able to make it in, simplifying things some. In the end, he just cancels our flights himself, moves them to our next Tampa trip (for a one hundred dollar additional fee!), cancels our rental car, makes a hotel reservation in Macon and we will be on our way this evening. We plan to drive to Macon, spend the night, then on to Tampa tomorrow. We should get done in Tampa around noon to 3PM on Monday, so will probably drive about half way back that evening, and make our way back home on Tuesday. Obviously, I am not happy. I felt that all this was too invasive, requiring way too much time, energy, and money in the first place....so this is NOT the way I wanted this to go! So much for what I want I suppose.... Oh, well...enough belly aching. Got to go do the elliptical and get a shower so I can go down the Signal Mountain Slip and Slide!!!

Hope all of you are having Christmases that are much less eventful and psychotic!!! Love to all - c

Saturday, December 18, 2010

FYI

Just thought you might be interested to know, that based on the lab work done while I was in Tampa, I do not have HIV, Hep B or C. My thyroid is working great, as is my gallbladder. My hemoglobin and albumin are excellent...proving that I have, in fact, been eating well!!! While coughing incessantly my WBC and CRP are perfect, showing no signs of an infection or inflammation. And my LDH (a tumor marker) is low normal despite a possible tumor in my head. My chest x-ray was pronounced normal, which actually gives me some pause, as I am missing a lobe, but there you have it.

Since resting hasn't been helping, I did the elliptical for 20 minutes this morning and lived!!!

Have a great weekend!

Let's get the party started!

On Wednesday, Brent finally got things set up, perhaps only by calling Dr. Weber's nurse, not the one I've been dealing with. Apparently she got the study nurse in gear who then called Brent back with our start date. I will have my first treatment, vaccines, and pre-study leukophoresis on Monday, Dec 27. Brent and I are flying down on Sunday so we can be ready for the 0730 start time. We have a direct flight from Atlanta both ways and will return Monday evening. I know Weber is giving me a chance here, but I can't honestly say that I am thrilled about it. This level of disruption, expense, time, pain, possible side effects...only looks good when weighed against death, someone digging in my brain, or someone screwing things into my skull in order to zap my brain!!! The second session will be on Friday, Jan. 14, and every other week after that for a total of 6 sessions. Then, if scans remain clear, I will repeat the process for another 3 months.

Picked up the Rose Bud from GT yesterday. She looks wonderful despite her recent study marathon and I'm sure she did very well on all her exams. Fred got his reports from UT and did great! I am proud of them both. It is fun to have them both at home for a while.

Enjoy your families, with love - c

Tuesday, December 14, 2010

Frustrated!

Rather frustrated with my nurse in Tampa! She said she would call on Monday with dates for my induction and lab intro into the study. Never did. By noon today, still no word, so I left a message. Around 4pm she called saying she had been busy with this and that and had finally made it through my "lengthy"records....oh well, suffer with melanoma for 7 years and you'll be happy if you have "lengthy" records. Let that pass. Then, she wants to know where my CT results are.

On the same CD as the MRI.
Oh?
Yes.
Well, I'll have to get the radiologists to review those.
Ok, take your time!

Then she calls back, where are the written reports?
On the same CD.
Oh?
Yes, but I can fax you a copy if you like.

So, I have Brent print that off and send it to her.
I really hope she gets it together tomorrow.

I have limited time....for the trial and in general! I have patients to reschedule, plane tickets to arrange and a fx@k*^g tumor in my head!!!!!!!!!! When I tell people I'll call them back....I CALL THEM BACK!

Oh, well.....such is life. Hope the rest of you had your phone calls returned, roads that weren't icy, and heads that aren't hiding tumors. Love - c

Sunday, December 12, 2010

Melanoma Neverland....

Apart from multiple extremely smelly people on the planes, the trip to and from Tampa was no problem. It wasn't 'sunny' Florida, being rather cloudy and dreary, but it was much warmer than the weather here. Moffitt Cancer Center is a huge facility, a fact that is both reassuring and disconcerting all at once. Was processed efficiently. Free valet parking. (Way too many folks with cancer....don't you think?) Dr. Weber was very timely, very frank, and much like his video personality. Completed a full physical...YUCK!!...not that I would do any differently were I in his position! Dr. Weber was fully aware of all my history. (Brent had overnighted all my records, scans, etc. a couple of days prior per Weber's request, but I didn't know if they would really be reviewed before my arrival or not.) He had some questions about the tonsil issue. What had it felt like? How had I found it? Took a complete history. Then, he told us that I looked like I would be a great candidate for his trial once I repeated the scans and got the remaining lab that was needed. Brent and I began to look confused since I had had the needed lab drawn the week prior on Thurs and the MRI and CT scans done on the Friday prior. We told him that was the case and also informed him of the met that was reported on the MRI. He immediately got someone working on finding the results of the lab work and an hour later it turns out that I have the antigen as well as the subtype needed for the study. He sent someone over to his office to look for the missing CD when Brent insisted that the CD had been included in the packet he sent and it was determined that the last CD just didn't get loaded on the computer for review.

During the wait for all of this, Weber sits down and just starts going over my options....all of them. Other drugs.....none. They are either not available or ineffective. Talks about Timadar and whole brain radiation. Dismisses it as not effective. Ipi....good but not yet available. Other studies....I don't qualify....either they don't want anything present in the brain at all OR they want measurable disease and 3mm is not large enough to consider "measurable". I would have to wait for it to grow and then still may not qualify since researchers don't typically want folks with brain mets in their studies at all. I could do stereotactic radiation as I did before and then enter his study 6 months or so later. That is so because (and this was the case with my scans) when follow up scans are done, it takes 6-9 months for the area to quit lighting up. Until it does, they can't say for sure that all the tumor is gone and he wouldn't be able to let me in until then. During that time, he doesn't like the fact that I would go untreated. Because in order to get into the study, I not only have to get rid of that lesion, I can't grow another. He tells us that I am in Melanoma Neverland. Meaning, that until I get less, or more, disease.....I can't get any drugs that might prevent the development of additional disease. He says that if it were him, and at first I don't know if he means himself as the patient or himself advising me....though it becomes clear that he means if he were in my position....he would have the lesion surgically removed. That way, it is gone. Within 4 weeks I could be in the study, getting drugs that might prevent further tumor growth. At about that time, someone advises him that the CD has been found and loaded. He says we can go if we need to catch our flight and he'll give us a call...but Brent tells him that we are here to get all the information possible and that our flight is not until Sat. He tells us to sit tight and that he is going to call a neuro friend of his to look at the scans as well as radiologists to take a look. Off he goes....

Weber pops back in to tell us that he doesn't really know that it is a met at all. He is going to get the other folks to give their opinion.

On his return, he says that the other radiologist/neuro people couldn't definitively say that the lesion in question was a met. He tells us that to his mind, I have "minimal residual disease" and therefore qualify for his study should I wish to participate in it. I figure the conversation went something like this: Weber = Do you think this lesion is a met? Neuro/radiologist = Well, given her history, probably. Weber = Yes, but, on its own. Can you tell me that this is definitely a met? Neuro/radiologist = Well, not definitely.

Bottom line = I think it is a met. I also think that Weber is trying to cut me a break. I can take care of this lesion...it's hell....but I can do it. The problem is, the rest of me, continues on....untreated. Not that Weber's drug combo is perfect. So far, it helps only about 1/3 of the patients who have had it. The side effects are less severe than those with ipi....at least in the small population who have taken it. And Weber believes, that like ipi, it has effects on brain mets. However, he is very straight forward....again disconcerting....but for me....it is what I prefer. He is very frank in that I am taking a risk with his study. He thinks the drug will help me....but it is a study. He can't be sure. That is why he is doing the study. He thinks that I will be better off with treatment for my lesion, the rest of my brain, and the rest of me in general. But he can't be sure. I asked, given the question mark in my brain, would he scan me sooner than the scans incorporated in the study at the 3 month point. He is very clear that he would not. If they were to scan me in say, 6 weeks, and the lesion in my brain is larger, then I am off the study....with no better options than I have today, and no chance of medication. Yet, it is a risk because in 3 months, my lesion could grow....but as I see it....I would be just where I am now....though out time, energy, money, with some side effects, and with a bigger lesion. But....still...with a lesion in my brain that I could have irradiated or surgically removed.

Also, somewhere in all this...we find out that if this treatment fails (and I grow additional lesions) I could still receive ipi. However, if I were to take ipi first, I would not get to take PD-1 and the vaccine (even if, in the years to come, they are found to be a remarkable cure!). The FDA has, in its wisdom, decided that the cumulative effects would be too great. However, that makes no sense to me (and especially to Weber) because to agree with that you would have to redo all mathematical laws, not to mention common sense, that additive effects can occur in BOTH directions! Bottom line, I can do ipi later if needed, but if I do ipi now, I will never have PD-1 as an option.

So what to do? I agreed. Partly because I can withdraw at any time. Partly because it was 5pm and I needed a CXR, lab, and an EKG to be completed before acceptance and if I waited to think on it over the weekend...I would still have to get that done and read, etc, etc. And....I am in a real time crunch. I have to start treatment within 28 days of my last scan (and at this point I am already down to 21 days) if I am going to do this and Christmas and New Year's (i.e. office is closed on 2 Fridays) fall within that time frame. And, NOBODY wants another scan of my head done, if I am going to participate in this study!!!!! After that I was whisked away, and a chest x-ray, EKG, and labs were done all within 20-30 minutes. The nurse in charge of the study is to call me Monday with my start date.

Because on your first and last session, you have to have leukophoresis completed (a process where 2 IV's are started and blood is withdrawn from one, sent to a machine to withdraw white blood cells then returned to you in the other IV) so that they can tell if the meds jump started your white cells like they hope, it requires scheduling that as well as your treatment. Therefore, what with the holiday issues, it is not clear what day they could get my treatments started. However, after I get situated and the holidays are past, I will be able to have my treatments on Fridays, so I am glad about that.

In any other world, this sucks. However, in melanoma world, when it is compared to being dead, someone digging around in your brain, or have things drilled into your skull...this looks pretty do-able! As Brent put it, we are in Melanoma Neverland, but this may be a door out.

Wednesday, December 8, 2010

Hot tip on the next Times best seller....

Thanks to my incredible (read: wonderfully insane) and supportive friends, I have the name of the next hot ticket in the world of books. When telling of my difficulties of living with a man completely obsessed with me and my melanoma (In most ways it's the most fantastic life ever...I mean, my lunch is packed and placed in my car with a special note, EVERYDAY, and dogs are walked, and fresh flowers are on the table, and the kitchen is cleaned, and groceries....lots of groceries....are supplied, and I am petted....well, there's more, but you get the idea!) and how large chunks of time are spent researching the blasted disease on the computer until I say, "ENOUGH!!!!"; she starts laughing hysterically and says, "You know, most women would hear the click of the computer keys in the night and think..."Oh, no! He's up searching for porn!" "But, for you, no, he's just reading about melanoma!" And then, another friend sends such a sweet and psycho note (in just the way that I love) telling me that I WILL kick this "Cancer Bitch's" ass, because of course, it has to be a woman. I mean, no man, would have this kind of persistence and tenacity! So with all that....drum roll please....the new, soon to be released, Times best seller is: MELANOMA PORN AND THE CANCER BITCH! You heard it here first.

I think I could sell about 50 copies. :>)

Anyhow, the obsessed one and I are off to Tampa tomorrow afternoon. Today we were sent confirmation of our appt around noon on Friday. So, we'll see what Dr. Weber has to say. At this point, I would just like a recommendation of what would be best to do....whatever that is.

We'll be back on Sat. Will keep you posted. Much love - c

Monday, December 6, 2010

Well, that sucks!!!!

Got the official read of the brain MRI today and there is another met, 3 mm, high right parietal, at the junction between the white and grey matter. Brent was adamant that it was there on the October films (though the current reader says it wasn't) but on Brent's closer inspection it does seem to have grown. So.....if this is the case I will not be a candidate for the PD-1/vaccine trial in Tampa, at least not at this time. I suppose that I could have it irradiated, and then, if 3 months later, it appears to have been taken care of and nothing else has developed, I could pursue the trial again. But....that's a lot of ifs and I don't know how long they will continue enrolling folks in this particular trial.

So....in his distress today....Brent began looking for other options. Found a newly posted trial for the second BRAF inhibitor (the one that has an effect on brain mets) for which patients with treated and untreated brain mets are eligible. (Hey, look at me....I can do this trial with BOTH arms!!!) He called the pharm company. They didn't know much. Gave him another number. He saw that is was a Tampa number, due to the area code. Called that. Ended up talking to Dr. Weber's nurse!! (Isn't it a wonderful, small, melanoma world????) It seems that he may be running this trial as well. She didn't know too much. Said it was starting up in Feb. We would have to talk to Dr. Weber. He hasn't called back yet. Will have to check with him, hopefully tomorrow, to see if it is worth our time to go down to see him Thurs.

Don't know what we'll be doing. Told the kids. Such great news to hear during finals....or just anytime! They are amazing. So bright. So strong. My magnum opus. Love you my little lebchukens.

But....Fred said it best...."Well, that sucks."
Love you all. Will keep you posted - c

I'm sick...

...of: being sick, thinking about being sick, planning to be sick, and...you get the idea. I think I need of big dose of hypochondriasis. Brent would be so pleased.

Have a great Monday! c

Sunday, December 5, 2010

?Perguntas?

I have many questions for Dr. Weber.....feel free to add yours....

When did your PD-1/vaccine trial begin?

How many patients are currently enrolled? How many do you plan to enroll?

What side effects are you seeing in your current patients?

What side effects do you expect to see as these and other patients continue the trial?

What positive results are you seeing currently?

What positive results do you expect and how do they compare to the results of your study of Ipi?

Why should I take these medications, rather than wait for Ipi as it is coming on the market in March?

What days are available for the infusion/vaccine therapy?

How long does the entire process take?

How long must/should I stay in your facility (in Tampa) after the treatment?

When do side effects begin....during the infusion? after the infusion? how long after the infusion? Are side effects worse at the beginning? Do they become worse as you progress through the doses? What is the treatment for side effects? Who pays for the treatment of side effects?

When do you expect the next scans? Who pays for those scans?

What treatment would you recommend for your wife?

What would you choose for yourself, if you had had melanoma for 7 years, with 2 skin lesions, a positive node, lung metastasis treated with a lobectomy, a probable brain met treated with stereotactic radiation, and 6 months later a melanoma tumor on your right tonsil removed 1 month ago?

Tampa here we come?

Brent has been in touch with the doctor running the PD-1/vaccine trial in Tampa over the past bit. Dr. Weber looked at my October scans and agreed that they were melanoma free. He did however, need an additional lab test to determine that I was the appropriate subtype of the antigen we already know I have and needed another set of scans so that they would also prove that they were melanoma free within the required timeframe, should I choose to participate in his trial. So...Thurs I had the blood drawn. That result should be back this week, although when he questioned Brent about my ethnicity, he said that those with my German/Irish background had a 90% chance of having the required subtype and didn't seem too worried about it. (Of course, he doesn't have melanoma, so that's easy!!) Friday, I had a brain MRI and neck, chest, abd, and pelvic CT Scan. The CT's have been read as demonstrating NO melanoma. The MRI is still officially un-read, though Brent has perused all the pics and reports them unchanged. So, I figure that's a pretty accurate read! Either way, the group in Tampa will have the last word, as they will overread them anyway. I still don't know for sure that I will be accepted into the study, nor am I certain that I wish to participate in it. But, Brent and I will be flying down to Tampa Thursday afternoon for a Friday appointment with the big man himself. I guess he will have to make his decisions and I will have to make mine. I have many questions for him regarding PD-1, Ipi, as well as particulars of the trial itself. So, I will just have to see what happens. Will keep you posted.

Had a great weekend. Ruthie came up on Friday after my scans and we got to play and rest together. She has made it back home to Alabama safe and sound, but it was so nice to get to spend time with her.

Back to work for a few days and then off for my winter get-a-way to the Sunshine State!!! ;>)

Friday, November 26, 2010

I am thankful for loyal friends and family....

In others, I admire intellect, enjoy those who make me laugh, am inspired by those who are artistic, am warmed by those with a state of grace, aspire to those filled with warmth and compassion, and appreciate the hard working. Yet, those who steal my heart and suffer my ever lasting devotion, are LOYAL. Cancer (and probably any other sort of adversity) can weed out those lacking in that attribute quicker than you can say, "Lions, tigers, and cancer! Oh, MY!" I have been hurt by the sudden disappearance of those that I thought were close. Yet, I have found strength and sustenance and shining loyalty in some I loved and some I thought I only knew as coworkers or acquaintances. Those true and loyal friends and family have become a gift beyond measure and have surpassed any relationships I have ever experienced before. These are the dear ones who I know, if called, will come, at any time, day or night, no questions asked, no explanation expected. They will support me, or anyone I ask them to, right then, and forever. They make me feel special. They have my back, even when I'm wrong, or grouchy, or happy, or weak, or sad. They are more than rocks, they are mountains! And once found, you realize, they are often not just your mountain, but mountains of strength and unwavering support to many. I feel truly blessed and loved and thankful, for all of you in my life. And there is one, even more loyal than the best, who thinks I'm pretty with dark circles under my eyes and tubes in places no tube should be, who sees me when I am at my worst and finds me precious still, who has been with me through thick (though he recently admitted that he found that very "weird"!!!) and thin (and sometimes even thinner) who is my champion and my hero. And because Vince says it best....this one's for you..........

Sometimes this old world gets to me
I sure can be a jerk
But you always see the best in me
God knows you've seen the worst
You know when to let me be
Pull yourself real close to me
How to take my breath away
You don't care who's right or wrong
I know whose side you're on
It's more than the love that we make
It's what you don't say
It's what you don't say
What you...don't say.

I love you, Bent. Much love and thanks...to you all -c

Friday, November 19, 2010

Released from ENT

Saw my ENT today and he felt that I was healing very well and I am released from his care. He (as does Brent and my oncologist) thinks that it is possible that the tumor on my tonsil was seeded there by tissue from the tumor in my lung that was left when the bronch was done. Yucky as that is, it would be preferable to having developed another metastatic tumor, but we shall never know. (The reason they think it is possible is because of the events of the bronch itself, the fact that a bit of tumor fell out of the bronchus during surgery when I had the lobectomy, and because the tumor of the tonsil was "on" the tonsil rather than within it.) He continues to recommend NO further node removal.

Anyhow, Brent and I did errands, groceries and such after the MD appt. Looking forward to playing in the dirt tomorrow with some fall planting.

May you all enjoy a beautiful autumn weekend - c

Thursday, November 18, 2010

More info....

http://www.oncologytube.com/index.php?page=videos&section=view&vid_id=100400

Brent has been a busy bee as ever....Yesterday he spoke with docs in charge of melanoma research at Emory (in Atlanta) and at UAB (in Birmingham). Today he reached Dr. Weber in Tampa.

The first two were very nice, listened to my history, discussed general issues with Brent. Both advised that there were no current recommended adjunctive therapies and no trials that they were aware of for which I would fit. They did let him know about Dr. Weber in Tampa and another Doc in Knoxville and gave him info on how to reach them. The Doc from UAB said that he had taken part in a trial that had used only the high dose month of interferon and the trial had been discontinued because the patients had fared so poorly. He added that as more time passes, the more they realize that interferon does very little, if any, good. Both were very positive about the showing that Ipilimumab is demonstrating in its trials. The only sort of strange thing was is that they said it would be available in March rather than the Dec date that Brent had found. Both noted that I had rather "indolent" disease...basically since I'm still here. They both offered their assistance should Brent wish to call them later.

In speaking with Dr. Weber today, it appears that I fit a trial he is doing in Tampa. It is with another immune stimulator (monoclonal antibodies) combined with a vaccine. He thinks highly of ipilimumab, but thinks this drug combo is one step ahead of that. The people in the trial have to be Stage IV with all tumors resected. He wants to look at my MRI to make sure that he agrees that I have no tumor in my head. He also needed to know that I have the particular antigen that his drug and vaccine are geared to work on. Brent looked at my path stains and it appears that I have it. He says that the immune response side effects that are present with the ipilimumab (diarrhea, rash, thyroiditis, and changes in the pituitary....which he says he can take care of with steroids and go away when off the drug) are even less in this drug (anti-PD-1 human monoclonal antibody MDX-1106). The regimen would be IV infusion of the drug with a shot of the vaccine once a week on weeks 1, 3, 5, 7, 9, and 11. That cycle would be repeated every 12 weeks for 2 courses in the absence of disease progression or unacceptable toxicity. Patients may continue to recieve anti-PD-1 infusions every 12 weeks for up to 2 years in absence of same. So.....I guess we will find out more about that. My main question would be....If you think so highly of ipi, then why should I do this drug now, instead of waiting for ipi to become available?

The link at the top should get you to a video of Dr. Weber talking about a drug like ipi whose trials were stopped, a lot about ipi and its results, and some about anti-PD-1, if you're interested.

What to do???????????????? Love to all - c

Sunday, November 14, 2010

We begin again....

One of my favorite professors ever, was a geology prof I had at UTC. (Don't even ask why I took geology...but I really liked it!!) He would look out over the class after explaining some geologic scientific gobble-dee-gook, and ask, "Are you 'wis me? I think, no. We begin again!" It has become a family phrase.

And so it was this weekend. I put in 6 miles of a run/jog, 2 each day for the past 3 days. I had to stop and breathe about every quarter mile, but I did every step...even all the way to the driveway, Rosie!! It hurt less each day so that is something. Brent supervised...so worry not. In fact, I think I made him proud. And, so tomorrow....

We begin again...... c

Saturday, November 13, 2010

Musical Musings...

Music has always been a part of me. Once as a little girl, when trying to memorize my multiplication tables, I burst into tears. When my mother asked what in the world was wrong with me, I told her I would never be able to learn them, "unless they are made into a song". For some reason, music has always been something I loved and could easily memorize and recognize. Music I've heard becomes engraved within somehow. Songs become part of my memory...certain songs are part of the trip to hospital clinicals in Pensacola as I drove to them at 5 in the morning...others are part of a beach trip I took with my sisters....just hearing a few notes...and I am right back there. Growing up, I was happy to listen to Air Supply with Ruth, Metallica with Kik, Momma's easy listening and show tunes, or Daddy's country stations with Kenny Rogers, Loretta Lynn, Tammy Wynette and all the others. Belting out something by Bon Jovi, Barbara Streisand, Madonna, Bonnie Rait, Adam Lambert, Pink, or from Porgy and Bess is great while cleaning the house, driving to work, rocking babies.....you name it. Chilling with Wynton Marsalis, Diana Krall, or Harry Connick Jr. is just perfect to me. But, more than just enjoying music, I can't NOT hear it. Much to Rosie's initial dismay, I am incredibly likely to start singing and dancing to the music coming over the speakers at Bi-Lo. At this point, however, she has abandoned all hope (or perhaps embraced it?!) and is now likely to join me. At the movies, I am the musical director's girl. I drive Brent crazy talking about the songs and musicians I hear behind the show....John Travolta's performance may have been essential to Phenomenon but it would never have been the same without Jewel's cover of "Have a Little Faith in Me". GI Jane was made by Chrissie Hynde's vocals. When I watch Notting Hill, I hear nothing but Bill Withers and Elvis Costello. This is a long way round to let you know some verses that are ringing in my head these days.....

"Look, if you had one shot, one opportunity to seize everything you ever wanted, in one moment, would you capture it? Or just let it slip? Lose yourself in the music, the moment, you own it, you better never let it go. You only get one shot, do not miss your chance to blow. This opportunity comes once in a lifetime, YO!" Lose Yourself Eminem

"I got a short attention plan, can't sit around couch potato land. I wanna do all kinds of stuff, talking about it is not enough. I like my food with chili in. I like to laugh til it turns in. I wanna stare fear in the face. I wanna take it all the way. If you're gonna jump, then jump far, fly like a sky diver. If you're gonna be a singer, then you better be a rock star. If you're gonna be a driver, better drive a race car!" If you're gonna Natasha Bedingfield

"Yeah, it's been a ride....I guess I had to go to that place to get to this one. Now some of you might still be in that place. If you're trying to get out, just follow me. I'll get you there. I'm not afraid to take a stand. Everybody come take my hand. We'll walk this road together, through the storm, whatever weather, cold or warm. Just let you know that you're not alone. Holla if you feel you've been down the same road." Not Afraid Eminem

"Don't cry, you know the tears will do no good, so dry your eyes. Oh, they told you life is hard, it's misery from the start, it's dull, it's slow, it's painful. But, I tell you life is sweet is spite of the misery, there's so much more, be grateful. Well, who do you believe? Who will you listen to? Who will it be? 'Cause it's high time that you decide, in your own mind. Oh, they told you that life is long, be thankful when it's done, don't ask for more. Be grateful. But, I tell you life is short. Be thankful, because before you know it, it will be over. 'Cause life is sweet. And life is, oh, so very short. And, life is sweet." Life is Sweet Natalie Merchant

...and so it is. Love - c

Thursday, November 11, 2010

Oncology visit limbo.....

Well...the news...is sort of no news and sort of still in limbo.

In the most straight forward version...the standard recommendations for me at this time remain the same....do nothing except observe closely...OR...do interferon, one month of high dose (which my oncologist said is almost always cut short because no one can withstand the side effects) followed by eleven months of low dose. The odds for success remain the same except for the fact that over the years in which I've been dealing with this they have found that the people who do respond the best to interferon have my tumor typing....for whatever that's worth. They are not certain if it is really due to the drug's effects or just that the folks with my type just do better than others anyway. I did ask about the pegalated (sp?) version of interferon, which supposedly has fewer side effects and my MD reported that in her experience it was no better tolerated.

After that, the other most clear portion of the visit was the fact that since she can palpate no cervical nodes in my neck, she doesn't feel that a resection of additional nodes is needed at this time. She thinks that if they had melanoma in them they would not only be enlarged currently, but growing.

Now for the more complicated stuff, I have to back up a step. Melanoma tumors are bad news in and of themselves. But what makes melanoma (and renal cell carcinoma, it just so happens) so difficult to treat is that prior to tumor development, it actually changes the host's immune response in order to make a nice living area for itself. They have done studies on sentinel nodes (the nodes nearest the tumor to which primary lymph flow is going) that are negative for any melanoma cells, yet, they are filled with suppressor immune cells that block the activation of other immune cells and allow the melanoma to grow unchecked by the host's own natural defense. Therefore, killing off the melanoma cells alone with typical radiation and chemo doesn't do very much good. Immune therapy has always been thought to be the way to the cure. That is why interferon is used. It doesn't kill the tumors. But it is supposed to kick start the immune system. Ipilimumab is one step better because it does kill the suppressed immune cells while jump starting the immune response. In this same direction, vaccine therapy has long been something that researchers felt could be successful as a treatment as well. However, though many have been tried in various trials, none have demonstrated beneficial results.

Back to today: At about the same point Brent and the onc started talking about wanting to find a vaccine trial for me and go off on that tangent. I say, whoa people....you've never been that excited about vaccines for me before. An obvious reason for this, is that there haven't been any that were very promising in the past and there are several that are showing some good results in trials at this time. But, the more interesting thing is that BOTH my docs came to the same conclusion about me, without discussing it with each other until today. That is: they both see the possibility that I am providing a pretty good immune response against melanoma on my own. (I know! This is a little strange to hear, having just had my third surgical procedure in less than 6 months!!!) First, they think it is possible that the swelling and redness in my throat was my own reaction against the tumor that was growing on my tonsil. Of course this can't be proven, it could have been a coincidental virus, infection, reaction the the injected meds with the scans...but they are more inclined to believe it was an immune response. Secondly, there are now three different radiologists who have described the place in the back of my head as a treated met. (We know they don't read each other's notes, else wise they would know it isn't!! The big dummies!!!) But, Brent and my oncologist's point is that it may in fact be a met, that my own immune response took care of. And lastly, my oncologist said that since I have been in her care, she has gained other patients who...and here her face got a funny look and she took a different tact...saying....other patients whose disease had taken a different type of progression. I think that was all code for patients who were diagnosed less long than myself who have already died and/or are doing very poorly. So....all this equals that they both feel I am a really good candidate for vaccine therapy.

Problem: Vaccines are only available in trials. This means...some folks get the vaccine....some folks get water (preferable, I have to say to some of the crap they can give you). Trials have admission rules. Some only want people with measurable disease. Not me. I don't have any. Some want only those with a history of a lesion and a positive node. Not me. I had mets. SO.....

The oncologist had already put in calls to the oncologist at Vandy (He's in Australia at the moment.) and another at the Sarah Cannon Cancer Center in Nashville. Both are to get back with her by Mon or Tues and Brent will reach her on Wed. She wants to ask them about my options generally and about vaccine trials for which I might fit specifically. Brent already knows about one that is open in Tampa, another in San Fran, and another at Vandy.

Brent also laid out his big picture plan about taking Temodar now, so that should it fail I would qualify for Ipilimumab once it is out (It is to be available 12/25/10 with the caveat that it is only available to those who have failed a prior course of therapy.) She said that wasn't a bad idea and that we could do that, although she clearly didn't think that Temodar did much good. She didn't feel it was that toxic either...though I find that no matter how well intentioned, the side effects are never as bad for those telling you about them as they are for the person experiencing them. At any rate, the end of that was that she didn't want to do that just now, but wanted to see what she could find out about things from other folks and go from there.

If your eyes have not glazed over yet, thanks for listening. Will keep you posted on what we learn next week. Brent is off with me tomorrow and we plan to just play and laze about! Love to each of you - c

Sunday, November 7, 2010

Craziness again....

Like I've already reported, I had my brain MRI and whole body PET scan on Monday the 25th of October. During the scan, while on the table, my throat began to feel weird and swollen. I think, "Great, if I am having an allergic reaction to the mess they are injecting me with, things are going to get really complicated!" At any rate, the scans are completed, I do a few errands. My throat continues to bother me. Once home, I looked at my throat and sure enough, the entire area was inflamed and on the right side there is a black lump partially visible behind the right tonsillar pillar. (This is the structure on either side of the back of the mouth that seem to be the stage curtains to the back of the throat with the palate being the stage roof and the uvula hanging down in the center. Tonsils are lymphatic tissue that develop in childhood and may become infected with viruses or strep. They may be removed if those infections are repeated or if the tonsils become swollen so as to obstruct sleep and breathing. Otherwise, at puberty, they take on the texture of a prune or raisin and involute, shrinking back behind the tonsillar pillar.) At any rate, black and growing is not normal. I show Brent when he gets home and he is not happy. He speaks with an ENT friend on Tues and they place me on Amoxicillin and hydrogen peroxide/water gargles and I am to see him at the end of the week if things do not improve. The erythema gets better and I don't know if it is the decrease in swelling of the surrounding tissue or the increasing size of the lesion, but the lesion becomes more prominent, causing me increasing difficulty with speaking or swallowing. I see Dr. Barnes on Friday morning. He takes a look and says it needs to be removed. So.....Sat am (10/30) it is, along with appropriate margins for the size of lesion (1.9 cm X 0.7 cm X 0.8 cm growing on a stalk attached to the right tonsil). Since it was the weekend, no path results were available until Tues, when as suspected by all, the results showed melanoma in the tumor, but clear margins in the surrounding tissue that was removed.

This week has been interesting to say the least, having to tell all my friends and family after reporting the all clear on both scans as well as dealing with the hole in my throat. But as ever....all of you have come through for me with immense support and love.

I am getting better and will be seeing my oncologist on Thursday of this week to see what advice she has at this time. I will probably follow-up with the neuro folks and the ENT on Friday of next week.

Meanwhile, Bent got to have a birthday as did Tammy and Kik! SO....Thanksgiving has got to be a big ole celebration all around!!!! Love to you all - c

Tuesday, October 26, 2010

PET scan clear...

...so that is a relief. Thanks for all the caring people who worried along with me. So...brain and body all clear per the two different scans. Will be seeing the docs on Friday to see what they have to say and what sort of follow-up they want to do now...although I do not think it will change much from what we have been doing.

Hope all of you had a great day. With love - c

Monday, October 25, 2010

Such a good time in Atlanta...

...Brent and I rested and played...going to the zoo (LOVE the gorillas...esp the family set with the 4 month old baby and the twin 4 year olds running around acting the way Fred and Rose used to do!!!) and the botanical gardens...a little shopping and visiting with the Roo. Got to take her to lunch and dinner a few times and visit some on Sat. She is doing so well and adjusting to everything and everybody like a trooper!!

Back yesterday, got settled in and today was off to the scans!!! The MRI people and the PET people played well together again. Got one IV for the duration. The two ladies who have done both of these scans for me in the past are really super. They are kind, considerate and really make an unpleasant experience the best it can be. So a big shout out to two great radiology techs at Erlanger East and Chattanooga Imaging.

Brent has already reviewed and the folks with my neurosurgeon have already called about the brain MRI. It is as it was before. No change. The right frontal lobe zapped place is calcified as expected and they continue to refer to the place in the posterior occipital lobe as a calcification secondary to radiation of a brain met...although as far as we know...that never happened. We hashed that out last time...but, whatever, it is unchanged from the last MRI. Will be seeing the neuro surgeon and the neuro radiologist Friday. No results yet on the body PET.

Back to work tomorrow. Will keep you posted with the PET results. Love to all - c

Saturday, October 16, 2010

Poor photog, great runner!!


All my pics of Brent's finish are worse than these!!! He was so happy he wasn't last!!! Rosie went to him and ran him in for his finish!!! It was fun.

There she goes.....




Rosie did GREAT coming in somewhere in the 20's for women finishers and definitely in the top 100 because...SHE GOT A PIE!!!!!!!!!!

Warming up for the Pie Race



Brent and Rosie ran 6.2 miles this morning in the Signal Mountain Pie Race. The first 100 runners win an apple pie! There were 199 runners. It was cold!

Friday, October 15, 2010

More of biking to the ocean...



Dim sum and B's Oysters!




Brent downloaded his other camera....thought you might like to see some examples of Dim Sum and Brent's oysters and lamb sausage!

Biking to the Pacific

Despite our prior visits, we had never explored Golden Gate Park. Maybe I had assumed it is the area around the Golden Gate Bridge itself, which is park-like, but it is not. It is a rectangular property that is about 6 miles long and maybe 3 miles wide that goes from the middle edge of San Francisco to the Pacific. It was turned into a garden pretty much through the efforts of one man who began to plant rhododendrons and grasses that the other locals thought would never survive. He also began to reclaim land from the sea by placing sticks at the ocean's edge and allowing the waves to wash sand over them. As it did, he patiently placed more sticks. Over many years he created a beautiful park and the land over which the highway along the Pacific runs. On Wednesday, our last day in SF, Brent had his heart set on seeing the Pacific. Without a car, he decided we would take a bus to the area of the park and rent bikes. Despite a little difficulty finding an open bike shop at the start, we were successful and had a beautiful day...
Oh, San Francisco...biking to the ocean, walking along Haight/Ashbury Streets, riding buses with a wide variety of the human experience, street performers, an amazing Italian restaurant (La Briciola: the best waiter, patient and working to teach Brent Italian, squid ink risotto, crab with penne, cherry tomatoes and arugula, the best buffalo mozzarella I've ever had with prosciutto, tomatoes, and sweet balsamic...oh, my....tutti bella!!!!), a little corner Umbrian restaurant (where we gave a homeless man half our pizza...so many homeless...makes me sad...while we have so much...have always seen the most homeless on the streets of New Orleans and San Francisco....don't know if it is the local economies or the mostly mild weather....hurts my heart...we have plenty homeless people here in Chattanooga as Brent and I well know through our work at the Homeless Clinic...but....), walks along the wharf, beautiful flowers, the man I love........................tutti bella!

Thursday, October 14, 2010

More China Town




Yes, look closely and you will see the chicken feet in sauce, alongside tripe and blood sausage in most shops...and wait...ONE, and only one, tall, blonde person!!!
Ever since reading all the Pearl Buck novels I could get my hands on as a young teen in south Alabama, I have loved the idea of steamed dumplings and rice....dim sum. We had tried to find authentic dim sum when we were in San Francisco with the kids about 7 years ago and hadn't really succeeded. This time we hit the jack pot. As you walk along in China Town, especially if you are blonde and on the main street, you are constantly accosted by women with fliers advertising various restaurants. They don't speak English, because if you try to actually speak with them, it is not possible, but they do know a few English phrases...."Eat here. It good." "Real good Chinese...down street 3 doors." There are also those who stand directly in front of the restaurant entrance and try to lure you in...."Eat here. Dim sum good. You like!!" One was so cute, and obnoxious, that I fell for her. So, Brent with a big question mark for a face, followed me in. Rather, up. Many of the shops in China Town are actually above or below the street level. In this case, it was up. Steeply, up...many steps. We made it, and were suddenly in a cool, quiet sanctuary...with high ceilings and open windows looking over the street below. Simple, but clean and nice. Ladies came by regularly with trays filled with fried or steamed dumplings, egg rolls, wontons, shu mai (little wanton wrappers twisted around a pork filling and steamed in bamboo steamers), pork buns (my least favorite...they are very pretty round buns of a rather doughy bread that may house a variety of things in the center...in this case pork from Chinese barbecued ribs...but they can also be filled with pickled fruits and jams....they may be very white when they are just steamed or golden and sticky when coated with some sort of sweet syrup). Anyhow, all these items are just a bite or two and each plate comes with 3-4 per plate. When you point to a plate or miniature bamboo steamer, the server places it on your table and stamps your ticket so that at the end of the meal the correct bill can be tabulated. It was really fun and delicious.
As we were leaving, the same obnoxious hawker was trying to lure two couples in. With my encouragement, reporting how good it had been, they headed up the stairs. Brent just shook his head. Hope they liked it!!! HA! We even went back on a different day! Yum dim sum! Just up the stairs. It good!!!

Wednesday, October 13, 2010

China Town

I LOVE China Town. There is the "main" street with all the tourist slog shops, still frequented by a zillion locals. Then there are the back streets that I adore. Butcher shops with roasted birds (chicken, quail, duck...all coated and dripping, some flat, some not) and huge 3 foot long and 12 inch wide stips of fried pork rinds, and chicken feet in all sorts of sauces. With the locals yelling their orders while the butchers hack the cooked fowl into pieces and place them in styrofoam boxes for the trip home. The fish mongers with live, dried, salted, and fresh fish...some I can identify...others not. The vegetable and fruit stands, where women jostle others out of the way to get their bags filled with the best and newest products. On my last visit, baby bokchoy was the prize. This time, a small fruit, which we watched on woman lift and give to her toddler, looking something like an oblong plum was the object of desire. I tried to find out what it was but could find no one who spoke English. All signage is in Chinese. What else? Oh, yes...the pharmacies...smelling old and dank and pungent with large glass jars of all sorts of dried roots and herbs. Can recognize various mushrooms, ginger and ginseng...but all else is unknown to me. There are the dry good shops with huge bags of dried mushrooms for just pennies, as well as dried fish, and huge baskets of what we finally determined to be dried sea scallops ranging from 18 to 50 dollars a pound depending on their size with the larger being the more expensive. I have no idea how they use them. I love the flavor and the mystery.

Tuesday, October 12, 2010

The Wharf



On some of our trips to the City by the Bay, the sea lions were massed on the piers. Today, only Gretrude had drawn the short straw. We had lunch at the Slanted Door with a beautiful view of the bay. So yummy!!!! Oysters with radish and vinaigrette (all Brent's favorites...NOT!!! And HE ordered it...just 'cause he knew I would like it...although having the 'digusting little morsels' topped with radish was even more than he had imagined!!!!), lamb sausage with a little salad, spring rolls, cellophane noodles with grilled shrimp, and roasted egg plant. All so very good.

Monday, October 11, 2010

Farmer's Market in front of the Ferry Building



On Saturday, we walked down toward the Ferry building on the wharf and discovered a Farmer's Market in full swing. Such amazing fruits and vegetables!!! I longed for a kitchen. We enjoyed delicious snacks and beautiful sights.

Sunday, October 10, 2010

The Embarcadero




Brent and I had such a great time in San Francisco! Played, relaxed, learned a little, ate very well. Hope the following pictures give you a little sense of the sights and sounds of one of my favorite cities.....

Friday, October 1, 2010

To San Fran...and other things...

Getting ready to head out to San Francisco. We will return on Wednesday evening and are both really looking forward to it. My teeth are cleaned and my new pants are packed!! :>)

In other news, if you're interested in the state of some upcoming melanoma meds GOOGLE: The New York Times for an article by Amy Harmon, New Drugs Stir Debate on Rules of Clinical Trials. The only drug that has been found to work more than "chance' alone, is being held up in trials, basically so that drug companies can make more money. These drugs are not causing side effects. Taking them does not kill your liver, kidney, cause heart attacks, etc....so it is not so delicate an issue as determining if benefit out weighs risk. They have proven their worth in trials that have already taken place. PLUS....there are NO OTHER DRUGS!!!!! AND...the PATIENTS ARE GOING TO DIE ANYWAY!!!!!!!!!!!!!!!! Read it and see what you think. There is, somewhat shockingly, a big uprising and debate going on, originating from a lot of oncologists who want the drugs for their patients..NOW.. that is not fully covered in this article. (Doctors are not known to be the most outspoken set of folks...sometimes tending to be more like sheep! Sorry to those of you that I know and love....but I think you'd all be the first to agree!!) I've seen one of the guys quoted in the article...Sosman from Vanderbilt.

The trouble with America's health care system is due in large part to the amount of control insurance companies and Big Pharma have over it. This is a perfect case in point. There are companies other than Roche making similar drugs and this is basically a fight over territory, patent, and money.....with human lives and comfort at stake.

Better get myself in gear and off to San Francisco!!!!!!!!!!!!!

Love to all -c

Saturday, September 18, 2010

Run Rosie, RUN!!!!!!!!!!!!

Today Rose ran in a 5K Race to raise funds for some Atlanta school programs (and to get extra credit in her required Health class). She came in first in her division and was the third woman to cross the finish line!!!! How cool is that? I'm proud of her for going to such an event on her own and putting in such a great showing. We had had the goal of running in local events like that one, together this summer but I had to have all my shenanigans so that didn't work out. I am very glad she took the initiative to participate today and I'm certain that this is just the beginning! Way to go, Rosie!!

For my part, I am pleased to report that I ran one of my better 3 miles just now with Brent and Z. For fun, I did keep up with my miles (not counting my biking, elliptical, and dog walking!) and put in 37 in July, 38 in August and have run 15 so far this month. It is kind of lame when I compare it to what I've run in the past and to the 30-35 miles (or more) that Rosie, Hailey, and Diana (2 NP's I work with) do every week! But, I am proud of it anyway. (I AM twice their age and have had a few hiccoughs!! HA!) Anyhow.....here's to my girls!!!! Keep on RUNNING!!!!!!

Tuesday, September 14, 2010

Looking forward...

...for someone who always loved planning the trip and looking forward to the wonders the upcoming phase of life might hold, almost as much as the trip itself....it is odd to find that looking forward has become uncomfortable.

As I try to explain, I must start with looking back. And I find comfort in the fact that I am truly able to say, 'I have no regrets.' That doesn't mean that I have done everything that I wanted to do. Nor have I done all things perfectly, but I am assured that whatever I have committed myself to, I gave it my all, with energy, enthusiasm, and hard work. Of this I am glad. I am proud that a little girl from Alabama with big dreams has been able to see so much of the world, attained a masters in nursing, took care of children in a way that she always wanted to, and created a family of her own. I am so grateful to whatever force that drove me, the professors at UAB who aided me, and my family who supported me through my last 2 semesters rolled into one that allowed me to finish my PNP degree at a time when I was not at all sure what would happen next. My ability to do my work has been a great joy for me and hopefully some small help to the children and families who allow me to be a part of their lives. I am beyond grateful for Brent and Fred and Rose. How I was so lucky to share my life with such wonderful, funny, kind, brilliant, and caring people I will never know. I am not ready to leave, but when I must, I am forever grateful that I got to see Rosie hitting her stride at Georgia Tech, having no doubts that the world will be forever changed in the best possible way by her busy, creative spirit. I have seen Fred, my little chubby, spitty, dumpling of a baby grow into a wonderful man. A person to whom others look for help, for fun, for a steady caring hand. I am certain he will find his place and lead others with his innate gentleness, humor, and grace. I am blessed to have been witness to the creation of two incredible adults.

I am content to have made it this far. So many, do not "come within sight of the castle of their dreams." I know. I beat the odds to have made it this far, and to have had such a beautiful ride along the way is a fortune beyond measure. Yet, I am greedy still. I would like to see graduations, and small joys, and even be there when disappointments come...as they always will. But, I don't know what will happen. And while that is true for all of us, I guess I do feel there is more room to question here. A few years ago, I would think about the kids being gone, and how much I was bound to miss them, but how neat it would be to have time with Brent and all the things we would be able to do together. But now that it is here...I have a hard time allowing myself to dream, to plan the trip. It is hard to buy a pair of pants...who do I know who could use a size 4 tall?! I can't stand the thought of wasting them!!! It is hard to arrange to have your teeth cleaned. I mean, that could be a waste of time and money, if you end up dealing with other things....and you spend so much time at doctor's offices anyway. On the other hand, getting things done for others seems very pressing. I want to be sure that certain things are accomplished, acquired, set up....in case I am not able to do it later. I guess this sounds rather strange. But it is my world these days.

Yet, Brent perseveres despite my protestations, as he has always done. Though we had known each other for over 4 years, we did not go on our first date until June 14. (Shockingly enough, we went running together! I wonder how many miles we have run together since!) Shortly after, he invited me to go to the Pediatric Intensive Care conference that was being held in October in San Fransisco with him. I politely declined, thinking that there was NO WAY I was flying across the country with this weird little man in couple of months!!!! We were married on August 26, that same summer. Toward the end of September, he brought me an envelope. Within were 2 tickets to San Francisco. Incredulously, I asked when he had acquired them. "When I asked you," he replied. (Not really sure, even today, how I feel about being a foregone conclusion!!! Crazy man!!!) I obviously went and had a glorious time. Now, 22 years later, he's done it again. We are going to the Pediatric Conference in San Francisco in October. (This time I agreed to go from the start.) Each day is a little bitter sweet. And I am trying. I have told my kids their entire lives..."Live each day as though there will be no other, and you will have no regrets." I am not entirely pleased with my every move on every day...but that has been my guiding mantra. And so it will have to be, even more so now. I did get the pants...for San Francisco. I'll call the dentist tomorrow.

Tuesday, September 7, 2010

Women

When I was in my late teens, early twenties, I railed that there was no true difference between the sexes. Distinctions between the sexes were more about societal expectations and demands. Then - I had a boy - and a girl - and I discovered...I was wrong! There really is a "buden-buden" gene and a " I love pink and sparkly" gene!!! One is no better than the other. This isn't about male bashing. My son is one of the most wonderful humans I have ever met and many of my dearest friends in my life have been male. But there is a special quality that is distinctly feminine. I have been thinking about this for some time (obviously!!) and wanted to share what I have seen and experienced first hand.

Having grown up in a family of 3 girls, trained as a nurse (3 times!), and worked in that field for 27 years...I have spent plenty of time in almost exclusively female domains. Women are not all sweetness and light. Plenty will stab you in the back...and the front. Just as many as will give you a helping hand will give you a shove down the stairs as you fall. Yet, there is a bond and gift, to all they touch, that only women can give.

I have been fortunate to explore museums in Athens, London, Paris and across the United States. I have seen amazing art and artifacts. But the pieces to which I am most drawn are the small things from the lives of women who went before me. Just as Agatha Christy, whose second husband was an archaeologist noted, "There are her needles, the remnants of her earrings, her cooking utensils, her pots for rouge." I realize looking at these things how alike we are. How, centuries before me, she lived as I do now. Taking care of her family, trying to look pretty.

I once read an essay written by a woman whose name I don't recall, in which she noted that when you put two women together who are both parenting a 6 year old, all else will drop away....social status, educational level, race, ethnicity, politics, religion. The commonality of rearing that child will bring them together, equalize their lives, in a way that nothing else can.

I watch the women in the hair salon. I have written several novels in my mind. I watch the hair dressers and the patrons...some are shy and uncertain, others loud, some prissy, some for whom this care and primping are just a routine part of their feminine world. It is comforting and entertaining to watch and listen as they let their hair down as I do mine...we are the same, we are here, we are sisters.

Then, there are the women who have and currently share my work life. These sisters have shaped my world and taught me all I know about being a nurse and taking care of children. They have supported me when I am down and rallied around others ANYTIME they are needed. They are there: with humor, with hugs, with tears, with casseroles. They will diaper your baby, they will diaper you. If you but ask, and even when you don't. It is a blessing. It is real. It is a gift beyond measure. I wish only to live up to the gentleness, the strength, the kindness, the joyousness that these women...strangers and intimates alike...my sisters...have shown me.

c

Monday, August 30, 2010

On our own...

Brent and I are managing without our little chickens. Fred is really enjoying his classes and taking him back to UT was more like taking him home than dropping him off at school. He's got some great friends and is doing very well. Rosie not only survived, but thrived, during her first week of classes at Ga Tech. She had a lot to get used to and figure out, but sounds like she managed everything well and had fun in the process. We are very proud of both of them.

We are working on learning how to purchase and prepare the right amount of food! Our big eaters are gone!! Also getting used to doing various chores: mowing, recycle, house cleaning, etc...without our helpers! We're getting there.

Hope you all have a great week. With love - c

Monday, August 23, 2010

Back to work!

How lucky am I?!!!! I arrived at work this morning to find a cute scrap-booked poster with photos and bubble comments and big letters welcoming me back hanging in the hall as the first thing I saw as I walked in!!! It made me smile. (Thank you , Hannah!!!!) Then........I got flowers and cake and cheese and snacks of all sorts and doughnuts!!!! I work with crazy people!!! The best sort of people in the world!!!

It was great to be back with my friends and taking care of my patients. Had to get back in the groove, but I think I got there. Sweet Diana had to give me all the updates and help me stay caught up!!! Was glad to find that I spoke Spanish just as badly as I did when I left....but my patients understood me and I them, so it was all good. (Brent and I are working on our Spanish together, as of this past Sat, although he is so far ahead of me that I told him he couldn't turn into a bossy, demanding teacher, or I wouldn't play his games!!)

To all of you at Peds Care...I thank you for all that you have meant to me and my family for all these years. You have made me feel special, given me the strength and opportunity to help children and their families in a way that I have always wished to do, and supported me when I needed it most. It means more than you know.

Better get to bed with my silly self. 0500 came early this morning. Haven't had to do that in a while!!!

May you work with colleagues like mine....then you don't have to call it work - c

Saturday, August 21, 2010

The tree

Trees are ever so much more impressive laying down than they are standing up!!! If you look closely at the right of the pic, you can see Rosie standing by this trunk. The tree people were here Thurs and Friday and removed most of it, but the main trunk will be with us, at least for a while!! Luckily Rosie's garden remains unscathed!
May all your trees remain standing!!! c

The Roo moves to Georgia Tech!!




We were all excited to moved Rosie into her purple-durple room with her friend (and now roomie) Maureen this past Thursday. She fixed it all up cute with her Daddy's prints (selected by Rose), the afghan I made her and lots of purple help from her Aunt Ruthie. We are so proud of her and happy for all the opportunities her hard work now affords her!! Knock 'em dead Rosie!!!

Monday, August 16, 2010

Tough day for my dear friend....

Hard news today for my friend. Please hold her and her family close to you heart. Spent some time with her at the hospital late this afternoon.

Rosie and I had a day. We exercised and I trimmed her hair for her. The dryer was delivered and we have it up and running all by ourselves since the Sears people will not put the vent and electric cord on it unless you buy new ones, which I didn't want to do since the ones we had were perfectly fine! Anyhow, we got that done with careful reading of the directions. And....it is so quiet and actually WORKS!!! The clothes get dry. They are not burnt. AMAZING.

Brent and Fred got rid of the old non-working microwave on Sat before Fred left. Then, they returned the newly acquired non-functioning microwave and got another one that they insisted they check before leaving the store. SO....it works. Brent is in process of fixing the cabinet around it.

In fact, I thought my new shelf and cabinet would be all set when I got home from the hospital. But, no. Instead, he and Rosie were out in the yard working like crazy people, sawing off limbs and hauling them about from a HUGE tree that fell this afternoon. (Poor Rosie thought someone had run their car into the house when it fell!) Luckily, it did not hit the fence, nor the house, nor any person. It did not take out any other important trees including our willow, nor did it knock any other trees onto the fence. And even more importantly, it didn't hit the newly installed garden that Rosie created for me. Brent and Rosie got branches off azaleas and other things so they wouldn't be any worse damaged than they already were, but everything looks pretty good considering. We will have to get some folks in to cut up the rest and haul it off.

Sunday we took Fred-o to Knoxville. Moving in was the usual college bedlam of crowded, slow elevators (He lives on the 11th floor...a climb he, Brent and Rosie made many times!!) and general chaos. My job is more about sitting with "stuff" and making the bed. He was happy to be back with his friends and in his own place again. We miss him dreadfully...but it is as it should be.

Tired with all the events of the day. Hope yours was much less chaotic. - c

Friday, August 13, 2010

Busy week...

Hope your week was a good one. Spent some time at the hospital with my friend each day. Her daughter remains in intensive care and my heart just aches for them all.

We have Fred about ready to head out. Stayed home today to help him put things together. Later, Brent and I went shopping for a microwave (ours has been dead for a while) and a dryer. Yes, I think it is finally toast. Or at least, clothing that is put in it go through the "singe" cycle....heat that will render the most sturdy of fabrics forever changed into small wrinkled balls. So, after much examination (thanks to Brent's Internet research and shopping at various stores) we settled on both items from Sears, with the dryer to be delivered Monday and happily brought the microwave to its new home ourselves. But, functioning appliances are not in my destiny. Despite a perfectly intact box, the microwave had clearly been slammed against a cement wall or sat upon by a 400 pound gorilla...or...well, you get the picture. So, I guess it's back to Sears in the morning.

Rosie made special pizza for supper in honor of her brother. Then, we watched Mulan for old time's sake together. "Can't believe my baby is all grown up and saving China!!!"

Will be taking Fred up to Knoxville on Sunday. Can't believe my other baby is all grown up and off to his junior year...and can pick me up and sit me outside of his room when I try to get him to go through one more pile of junk in his closet.

Hope you have a great weekend. Love - c

Tuesday, August 10, 2010

Warm wishes for my friend...

We are all doing well here. The kids are excited about going off to school and Brent and I are pondering what we will do all by our lonesome...we do have a few ideas!!! Hope your summers are winding down in the best possible way.

I do ask that you send the warmest thoughts and best wishes to a dear friend and coworker and her family. Her 22 year old daughter had a lovely baby about a week ago. However, on Friday the new mom was stricken with seizures and has been in the hospital in intensive care (now here in Chattanooga) ever since. The Peds Care family is pitching in in such an amazing way, as they always do, but help me hold her hand today.

love- c

Tuesday, August 3, 2010

Kicking back.....

The kids and I are just chilling for the next couple of weeks. We're going to go shopping for school shoes!!! (HA!) tomorrow and have lunch out together. I want to get them an extra pair of running shoes before they leave. When I told Fred the plan, he said he didn't need any because he has a pair. I said, "But, Freddie, I always get you school shoes before you start the new term!" He just looked at me saying he really didn't need any right now. I told him he could keep them in the box until he did. So, then I got a Fred hug with a kiss and an, "OK, Mommy." He used to think new tennis shoes could make him run ever so much faster and jump way higher than his old shoes ever could!!!

Today I ran badly with Rosie!! It was SO hot and I waited too late in the day. I've promised to do better and run earlier with her from now on.

So, after our shoe shopping we don't have much left to do. We'll move Fred back to UT on the 14th and take Rosie down to GA Tech on the 19th. Not sure what it will be like around here without my lebchukens!! But, I go back to work at Peds Care on the 23rd so that will definitely keep me busy and I am really looking forward to it.

Stay cool - c

Saturday, July 31, 2010

Such a lovely birthday.....

Thanks for the great trip, Rosie! We had all the girls (The Queen, Christina, Lady Sovereign, GaGa, Beyonce, Shakira, Gwen Stefani, and Adam Lambert), some angry testosterone (Eminen, Metallica, Dropkick Murphys, Pittbull, Don Omar, Kanye, and a little Bon Jovi for sweetness) to keep us jamming all the way to Prattville. It was fun. Once we got there we had a great time with Ruth and Kik and Rosie's cousins, Charlie, Shane and Becca. Plus on Thursday, Momma and Daddy joined us for a great lunch with Ruthie's amazing lasagna and special Birthday Peach Cobbler!!! You gotta love warm fruit!!! Right, Char?!!! :>)

Anyhow, Ruth's house is so great and looks just like her personality: open, warm and sunny. The kids and Kik and I worked to put in a Rose Garden with beautiful yellow Knock Out Roses that smell lovely in front of her porch. Charlie, Shane, and Rosie dug all the holes while Becca kept the ice water coming!! It was hot as the dickens but I had such a great time doing it! Thanks for playing in the dirt with me everybody!!!

Got back with no problems last night. It was great to get back to my boys and had a Special Birthday Breakfast this morning with Brent making me bacon and omelets! Delish! Plus, I got all kinds of warm birthday wishes from all my Peds Care buddies.

Thanks to all of you for making my 46 years so incredible.

"It's my life. It's now or never. I ain't gonna live forever. I just want to live while I'm alive. It's my life. My heart is like an open highway. Like Frankie said, I did it my way. 'Cause it's my life!" Bon Jovi

Love to each - c

Tuesday, July 27, 2010

Road Trip

Rosie and I are leaving early in the morning to drive to Prattville (just outside Montgomery, AL) to visit my sister, Ruth, and her family who have just moved into their new house. We are very excited. We will also get to see my other sister, Kik, and her daughter, Becca, who is staying with Ruth while Kik does some work in Atlanta (She lives in Houston.) but will be finishing that up on Wednesday...AND Momma and Daddy will be coming up to Ruth's at some point as well. Rosie has made us CD's for the trip. She has helped me root and pot plants for Ruthie and we have her surprise afghans ready (shh...don't tell), cause that's what you need in 100 degree heat!! Anyhow, we think it will be fun. Brent and Fred-o will be staying home taking care of things this time.

Have been running 3 miles a day since my scans. I'm finally feeling stronger...more like how I did before all this. One thing I know for sure. Had Rosie not petted me and run with me and encouraged me and babied me and threatened to put her foot in it on occasion....I would not be where I am today. Her careful attention and willingness to take the time to stay by my side for the slowest walks and runs I know she has ever taken, I wouldn't have kept at it. It has meant more to me than she will ever know.

"...If you can talk with crowds and keep your virtue,
Or talk with kings - nor lose the common touch;
If neither foes nor loving friends can hurt you;
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run -
Yours is the Earth and every thing that's in it,
And - which is more - {your have become} a Woman my daughter!" Rudyard Kipling

I love you, Roo.

Friday, July 23, 2010

Head docs

Saw both the neuro surg and neuro radiologists this morning. The radiologist was rather glib (as usual) and said that he was not impressed with the posterior lesion and didn't think it was anything. He was very pleased with the appearance of the frontal lobe lesion, stating that it was in keeping with his expectations for an area that had been irradiated so recently. That's about all he had to say on the matter. Didn't feel that there was a reason to do a repeat MRI any sooner than the one already planned as follow-up in 3 months, though if any of the other docs wanted it sooner then he would not object.

The neuro surg was sweet as usual and apologetic for not noting the occipital lesion initially and very sorry for any additional confusion or stress the new finding had wrought. He said he didn't think it was metastatic (because it hadn't "lit up" now or in the past, nor changed, etc.) though he apologetically said he still couldn't tell me what it was. He didn't think it was secondary to trauma. (Brent and I had postulated that it might have occurred in a bad fall I took down an entire flight of stairs with the back of my head thumping down each one several years ago.) At first he said, "Well, I think we should just go ahead and get another scan in about 6 weeks so that we can alleviate some of the worry." I just looked at him and said, "Whose?" He replied, "Well, your neurosurgeon's and his (pointing at Brent)! In an aside to Brent, he said, "She seems to be doing fine." We hashed it out a bit and Brent asked him, on a scale of 1-10, how worried was he that the lesion might be metastatic, and he said, "1". After all that, we decided to do the repeat MRI as scheduled, with the repeat PET, in 3 months. He too, was very happy with the appearance of the frontal lobe lesion and didn't feel that there was residual tumor there.

The whole thing is a bit disconcerting....I would have felt better had folks noted it and said, "Hey this thing is there, but we don't think much of it," and when it reappeared, we could all say, "Yep, there it is again." Brent will be checking in with my oncologist next week and see if she has anything to add and/or if she still thinks it wise to pursue a second opinion at this time.

I think it is an empty place in my occipital lobe where I had to delete some info because my brain was full and I needed some extra storage space for future sights!!!

"I see leaves of green, red roses too. I see them bloom, for me and you. And I think to myself, what a wonderful world. I hear babies crying. I watch them grow. They'll learn much more, than I'll ever know. And I think to myself....what a wonderful world." c

Thursday, July 22, 2010

Oncology visit today...

...and no real news. She is not sure what the "occipital spot" is either. She talked to Brent about the most recent studies and treatment options...still nothing there for me at the moment. She will be checking with some peers about who the neuro person is they most recommend to have offer a second opinion. She is to get back with us about that next week. To see the neuro surg and neuro radiologist tomorrow.

Fred-o got his new tires and says that they are great. Rosie is the sweetest and cleaned my house top to bottom while I was gone. May have to send a letter of condolence to Ga Tech and tell them that she just has to stay home with me!!! HA!

Stay cool...c

Wednesday, July 21, 2010

Results

Well...a mixed bag as usual. The PET was absolutely negative, which, contrary to the sound of it is a good thing and means that per this scan there were no tumors noted from the chin down. This is really good news since any bits that might have been left behind from the prior surgery can rear their ugly little heads in about 2 months, not that they can't do that later...but this is still good news. The MRI was more complicated. The lesion that was treated with radiation in the right frontal lobe looks as though it is a "met that was treated", now showing an area of 7 mm (it had been 4, but the area of radiation should be a bit larger so that is appropriate) that is a little weird. The only problem with that area is a rim of "enhancement" that could be a smidge of untreated tumor or just some vessels or who knows. However, overall that area was read as "inactive". The "interesting" find was an area on the occipital lobe that looks like a "treated met". Since I have, as far as I know, never had treatment in that area, the "find" has confused everyone. I had the MRI done at Erlanger this time and the machine is newer with a little better resolution than the machine used at Chattanooga Imaging in April. The radiologist reading the MRI had the old films sent over and indeed, found the same occipital lesion on the April film. Neither time did the area enhance, nor has it increased from its current size of 7mm. It mostly appears to be an area of nothingness. Brent got a copy of the films and we have seen it for ourselves. The frontal lobe lesion lights up on the April scan and doesn't now. The three pronged "blank" in the occipital area is indeed there on both films and doesn't light up on either. SO.............I will be seeing the oncologist tomorrow and the neuro radiologist and neuro surgeon on Friday to see what they have to say. The radiologist reading the films talked to Brent at length on all the results and recommends a repeat scan in a couple of months.

On a more mundane note, got Fred's car serviced today. Will be getting him new tires tomorrow. After that, all cars have been serviced and repaired and folks are good to go. My dryer that never got fixed by the repair man and had to have its old part returned to it so that I could get my money back is now working just fine. Bizarre!!! But, it's good enough for me. On the other hand, the microwave has died completely, but I'll take a dryer over a microwave any day!!

May the scans of your head remain dull and all your appliances be in good working order!! - c

Tuesday, July 20, 2010

MRI and PET....AGAIN...

...yesterday. They went as well as could be expected. Rosie had me out at Erlanger East on Gunbarrel at 0800 for the MRI. The lady there was very nice and remembered that she had arranged with Brent and the folks at Chattanooga Imaging to start the IV and leave it in for the PET scan they were to do immediately following the MRI. Her only concern was that Brent wasn't with me, but decided that Rosie was a "very pretty" and reliable sort! Once that was done, Rosie carted me across the street to Chattanooga Imaging where Linda, the same sweet lady who had done my PET last, did it again using my existing IV for the scan and labs, which was even more than I had hoped.

Once done, Rosie took me for a sub and we did the last bit of shopping for things she needs when she moves. Then, she drove out to get her car emissions checked and then to Erlanger's main campus where I had lab drawn in prep for all my upcoming doctor visits this week. After we made a small trip to the grocery store, we made dogs and brats with Kay's special relish (DELICIOUS, Kay....thanks!!) for the boys who walked in the door together.

So...here's to all my pokers working together!!! - c