Ok...Ill tease you with one cute picture before I unload the insanity that has been my last month and a half....ok....everyone, 1, 2, 3,....Awwwwwww.........
SO. The job is going great. I cant even remember if I mentioned this or not, but I made the difficult decision to break up with Dr. Romer and move to another oncologist (we'll call her Dr. X)since Im so much further south, and I just kept telling my self that maybe a fresh change of perspective wouldn't be so bad.
Right when I started my new job, I had a PET scan. And the results were great. You could almost say it was clean. "Significant Improvement" was noted at least once. This was a great way to start the new job right? The new onc ran the gamut of tests, and it really gave me the impression that she was going to be as thorough and aggressive as Romer. I even had a bone scan....that came back, you guessed it, clean. (Which was good, because she said if it was going to detect any active tumor, she wanted to do a bone biopsy to retest the composition of the tumor to see if it still was as estrogen receptive as it was in the beginning.....bone biopsy? ok. luckily it came back clean, that didnt sound like something I wanted to endure.)
So all the scans are great, job is great, but about a month after all these great results, I start feeling those hip pains that I get when ever I have a "flare up".....at this point, I had been riding the bus to work for about a month, and my new job has me walking WAY more than ever have on a professional level, so we were just trying to credit the pains to all the walking, right? I usually take the side seats in the front of the bus so I was even thinking maybe it was all the hip shifting back and forth on the bus. Because the last scans were so great, right? Right?
The pain wasnt going away, in fact, it was getting worse. Sometimes it was so bad I couldnt even sleep. Now, its been so long since Ive written so the timeline is a little fuzzy, but there was also a week where I was flat out sleeping 12 hours a day. Id go to work, and hit the sack, often before I could change out of my work clothes and sleep till morning. That little phase look back on and wonder if it wasnt some type of flu, but whatever. It sucked!
So at this point, Im getting comfortable with Dr. X. Her nurse is kind, and is accessible via email which was nice. I was feeling good about the new situation. When the pain began, I contacted them promptly. With Romer, the typical protocol is, I have the pain, I call the office, see if I can get in for a tumor marker, they quickly ok it with the Doc, I come in, get the blood work, and if its elevated, I get ok'd to go in for the PET scan, and we go from there.
So I called Dr. X. Or maybe I emailed them. Either way, I got my first of many slaps in the face with the response - "No, you dont need to come in for a tumor marker....your last scan was so good!" Subsequent calls to the nurse were responded with, "I talked to Dr. X, she said the pains are just side effects of the Lupron injections (Hormone therapy) you've been getting"
Huh? Really? All I want to do is come in for a simple blood test to confirm this. I know the tumor markers are the bane of every oncologists office....every patient freaks over a small change in numbers, I get it. But Ive been dealing with this for FIVE YEARS now, kay? And EVERY TIME the tumor marker goes up, the PET is bad, we need to change shit up, got it? No?
Let me reiterate this. I am across the street from the doctor. I can literally go over there on my lunch break to get this blood test. The Lab is IN THE OFFICE. I DONT need to see the doctor in order to do this. I am telling you that I am in pain. I am telling you that I really need to get this test just to assure my fears. I wanted Dr. X to prove me wrong! Let me come in! Im not even asking for a PET scan, I just want this stupid 27.29 Tumor marker blood test. Im not asking for much am I?
Apparently I was, while the pain persisted, the new doctors office persisted as well, denying me the opportunity to come in to get the blood work done, ASSURING me that I was just having side effects from the Lupron....and yes....again....my last PET scan was soooo good.
Defeated, I called the Drs office and told them the pain was so bad, could I at least get some pain killers? This, I was obliged. I was immediately give an Rx for Vicodin. So, at this point, taking the time to let me come in for blood work to assure a stage 4 cancer patient's pain isnt progression isnt necessary, but pacifying a stage 4 cancer patient who is in severe pain with Viodin is a good idea.
I struggled with the Viodin. I remembered taking it when I had my knee surgery. I remembered taking 3-4 and being ok. I took three one night, and woke up at midnight and was still in pain. Its been so long since Ive ever taken anything like that so I just figured I didnt take enough. Popped #4. I was up all night, nauseous on the bus all morning, yacked twice when I got to work, and took a cab home at 9:30am. I havent touched the vicodin since.
I called the new doc again. Please, please let me just get the tumor marker test. I can deal with the pain, but the test would at least relieve the stress of wondering if it really was progression. Finally, FINALLY, I was told I could get scheduled for the bloodwork. The timing is a little fuzzy, but I dont even think it was immediate. I think it was mid-week, and I was finally scheduled to come in for the blood work the following MONDAY. But unlike Romer where they would just call me and let me know the results, I also had to COME IN the following Tuesday to meet with the doctor. WHY WHY WHY did I have to come in to see the doctor? Whats the point? Lets just get the results and get on with it!!
So I go in on Monday to FINALLY get my tumor marker test done - seriously, like a MONTH after I asked for it. Romer always had the results the next day, so I expected to go in on Tuesday to meet with the doc to get the results.
I go in on Tuesday. While they were kind enough to schedule my appointments late in the day so as not to conflict with work, just about EVERY SINGLE APPOINTMENT included an additional ONE HOUR wait for the doc. Appointment is 4:30? I see the doc at 5:30. Annoying.
So I finally get into see the Doctor. I am on PINS AND NEEDLES waiting to hear what the tumor marker is. I ask what the blood test results are.
"Well, your CBC is fine.....and the Tumor marker tests arent in yet."
(in my mind Im thinking) WHAT!?!?! My CBC!?!?!? Are you f**king kidding me? I really dont give a rats f**king ass about the CBC test!!! I dont CARE about my hemoglobin.....my red blood cells.....my white blood cells....I didnt even ASK for the STUPID CBC test. I have HORRIBLE CBC tests where Dr. Romer still let me take an agressive chemo dose. Lady, my CBC is fine.
Apparently I look concerned, to which she responds to me, "Oh, Im sure the tumor marker has gone up." Huh? 'Scuse me? You're pretty "sure" its gone up? Apparently I hadnt been on anything since the change to her care or something but whatever the tumor marker results were, the results I have fighting high blood pressure and insane stress over, she was pretty sure it was going to be elevated. Im still not sure if this was supposed to make me feel better.
Blink. Blink-Blink.
I leave. Im not exactly sure what do do at this point. I have begged for the tumor marker test for almost a full month, and when they finally agree to give it to me, I am not given the results. I email the nurse, leave a few messages, and two weeks later, I have not been given a call back with the tumor marker results.
Now Im freaking out. The pain is still persistent. Mom is now freaking out which means action will be taken. She calls Kettering to see if there are any late 6p PET appointments. I call Romer and leave a tearful, freaking-out message with his poor nurse to see if THEY can order me the PET. I am called back within the hour. They cannot, unless Romer is my doctor. The next day I call "new doc's" office and all but insist they send in the order for me to get the PET scan. I get the order. (my usual nurse was on Vacation and the sub nurse took care of it for me....I wonder if that was why it was easy? I have no clue)
So the following Monday I haul it to Dayton after work to get the PET scan. Amanda at the PET office tells me she has faxed the results to my new doc Tuesday afternoon. So they are there on Wednesday. I wait all Wednesday, hear nothing. I call or email late wednesday for someone to call me back. I get the call back on Thursday. Although there was no soft-tissue progression, there was significant bone progression - Sternum, clavicle, hips, ribs, spine, neck, both femurs.....pretty much the worst bone progression Ive had ever.
Now get this. The nurse says, "I showed the results to Dr. X, and she said you just need to keep on what you've been on."......What Ive "BEEN ON" with Dr. X is minimal hormone therapy. Thats ALL SHE WANTS TO PROCEED WITH. So in other words, whether I had this horrible PET SCAN RESULT or not, she would have kept me on the same f**king thing.
I call mom, and break down. I dont know what to do. I cant STAY WITH THIS DOCTOR!! She calmly suggests that I go back to Dr. Romer. "When you go to Dr. Romer, you go up once a month, they take care of everything while you're there, you dont need to see him for every stupid blood test....and on and on and on...."
The decision was clear. The next day I called Romer's office and told them I was coming back. I called them on Friday. I was in the office on Monday. Romer had the PET results in his hands before my appointment and was visibly concerned. I was scheduled for a four hour agressive chemo appointement the following Friday. Im on Imprexa and Lupron and Zometa still.
So I went back to Romer on Friday. I had my four hour treatment, and Im still struggling. Ive lost almost 20 pounds over the last two months, which is great for fitting in my clothes, but cancer isnt the best way to lose weight. Im still pretty sore and tired most of the time, but Im just excited to start feeling the impact of the new drug. I historically take very well to new treatments, and often times, Ill start feeling better right off the bat. It hasnt kicked in yet, but we've had a long weekend.
Oh yeah. and Romer did my Tumor Marker. It was 505. For those of you who have forgotten, my higest marker ever was around 365. So this isnt great news. But more then I am scared, I am PISSED, because Im pretty damn sure my last tumor marker test taken at Dr. X's office, the one nobody called me about, was probably well over 400. And nobody called. The doctor was either not notified or didnt think it was a big deal.
I had chemo on Friday, and then Saturday I was in Brad & Dionne's wedding, so yesterday was a long, long day. I got a good nights sleep, and now Im just taking the time to catch up on some blogging. Again, Im sorry, the last two months I have so incredibly tired after work that I just didnt have the energy to sit down and pound out a post. Im going to try really hard to get back to my sunday posts, REALLY PAULY!!!
Ok, lets look at some more cute pictures of my nephew Drew...awwwww!!!
I love this picture. John was holding him and he was sleeping, but by the time I got my camera, he was just waking up, looking lovingly at his Uncle John;
Drew is a world class lounger:
Cousin Matt left for the Navy and we all went out to dinner a few weeks ago:
G-pa and I at the Ascension fest...
Then he followed the gang to Taggarts Pub and partied with Vince and Bone all night!
Now, while in and out of Pain, I have mananged to maintain some respectable social life. Nick, Mere, John and I decided to join in on the Kelts "Summer Camp", a pub crawl organized by Pepe. All "Campers" were assigned to a different colored camp and a camp counselor, and while, there was supposed to be some events, the drinking somewhat impared those plans. We were told this was an 80's style summer camp, so the old school tube socks and the cut off jean shorts were in full effect;
Pepe, Mere, Nick:
"Camp Howthefunkareya" at the Hofbrahaus - (Im in the back)
"Camp Spartyhard"
I ordered the sweet old school tubes for my team:
All camps get together for a group shot:
John, me, Nick & Mere
Now this is why Im frustrated....I have a video of John and Nick competing on "Dance Dance Revolution" at Gameworks at Newport on the Levee. I will get this video posted. And you Will laugh, and not just at Johns shorts:
Pauly and Nick, members of "Camp Wecandrinkalotta"
J-Mac is so strong...he threw Dane into the shrubbery in front of Jefferson Hall. And let me tell ya, Dane had all his wits about him at the moment...
Ok, this is a special feature for Jody and Jennifer, who are always checking in to see whats going on with our cat Guinness, or as we like to call him, "GET OFF OF THAT!!!"
A few days a week, he'll come and wake me up in the morning by lying on my chest and staring at me.
And yes Jody, he still gives kisses if you ask nicely!!!
Once he knows Im up, he'll go back to bed....
Mom & I went out the other day to pick up some new bras and couldnt resist playing around with the wigs....this chemo isnt going to make my hair fall out so no worries, we're just playin!!! (But maybe, just maybe, I might go this route if I ever lose my hair again, you know....if its winter, and its cold, to keep my head warm, thats all!!!!)
Look at me, Im Sandra Dee.....
Unfortunately, I didnt get many pics from the wedding, but mom did snap some of the church group shots...thats me up on the right:
The wedding party....im to the left of Dionne:
The boys:
And just in case you were wondering on how Drew is progressing academically, he is currently on a third grade reading level-he stopped reading for a minute to pose for this picture on the way home from the reception:
Ok....thats all. You all know the scoop, and like I said, Ill do my best to keep you updated on Sundays...is anyone still even reading this? Let me know.
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