For some reason, it's been a rough couple of weeks. I need a Melissa fix. I need to hear her laugh. I need to hear her voice. When that happens, I read the blog, or I go to saved emails from her. I found a letter that she sent to me to read over before she sent it to the doctor. She did post about this on the blog, but called the doctor, DR.X.
When she got the job at UC, they didn't know she had cancer. She didn't WANT them to know...she was GOING to get better. So she decided to switch doctors, so she could take her lunch hour for doctor appointments. That was all well and good, except she HAD a doctor that knew her...for FIVE years. KNEW that she KNEW her own body...and LISTENED to her body. The "new" doctor didn't know her. When she started getting pain in her hips, she called the new doc, who basically brushed her off.
It was two years ago this month that she left that doctor and went back to Dr. Romer.
Before I go on, here's the letter: (I chose to post the Dr.'s name because I would not recommend this doctor to anyone I loved. Maybe she was overworked, I don't know. But my daughter did not get the care that she should have from this doctor, and I need to get this off my chest...)
(letter from Fort)
I am writing to let you know that I will going back to see Dr. Romer on a permanent basis starting next week. I apologize for all the work you've done to get me going with Dr. Lower, but in light of my recent PET scan results, I am left wondering what would have happened if I would have just sat back and dealt with the pain while Dr. Lower attributed it to the Lupron side effects.
I know that Dr. Lower is a wonderful physician, but this practice is so far out of my comfort zone, I just can't deal with the added stress of all the extra rigamoroll to get simple things done.
While I was with Romer, there was a five year relationship there, and had I contacted him a month ago, as I did you, to request a simple 27.29 Tumor Marker just to make sure things were on the up and up, I would have been able to come to their in-house lab the very next day and have it done. I would not have been told that it wasnt needed, or that my last PET scan was so good, or that my pains were side effects of the Lupron, and I certianly wouldn't have had to wait to actually see the physician in order to have the test done. I realize the tumor marker test isnt the end-all-be-all for patients, but for me, after five years, we have found it to be very reliable. Everytime the 27.29 is up, the PET shows progression. I did explain this to you and Dr. Lower, but it seemed to have fallen on deaf ears. I dont feel it should have required the effort it did to have the test done.
Additionally, my tumor marker was taken on June 30th. It has been almost THREE WEEKS, and no one ever contacted me to tell me what the results were. I had to meet with Dr. Lower the day after I had the blood test done, and those results were really all I cared to know about, and her response to me was, "The results aren't in, but Im sure they've gone up...." What is that supposed to mean?
As we now have the most recent PET scan results, I guess its not even necessary to know what the tumor marker results were since we now know that my pain was in fact, what I thought it was, but I am curious to know if it just went up slightly, or if it took a huge jump. I certianly hope the 27.29 was not in the high 100's or over 200 and I was not contacted or no action was taken. Maybe I will never know.
I just cant take the risk of staying with a doctor, who, when I truly felt something was wrong, all but assured me my pains were side effects of the Lupron injections. Had I not called Kettering Hospital ON MY OWN, to find out when they had openings and all but insisted your office call in the order for the test, how long would I have been pacified with pain killers and been told to ride the wave of that last great PET scan I had, despite the bone pain, aches, and most recently, weight loss? Im not in a position health-wise to wait weeks or months for action when Im certain something is wrong.
I do realize that you are operating out of a much larger office and must have more rigid protocol to make your practice run smoothly, but when I need to see my oncologist, Im not used to having to call the Nurse, wait at least 24 hours in order for the nurse to speak to the physician, then the nurse calls me back to let me know if the physician even wants to see me....if she does, I then get transferred to the scheduling person, then, if Im getting treatment, I need to call the IV Therapy people to schedule that.
Another thing that bothers me is having to get the bloodwork done the day before, or the morning of the treatment. Im used to having it done minutes before I get my treatment. I have never once, in five years, been denied treatment due to bad blood cell counts. Its definitely a chore to come out the day before, or twice in one day, and Im just across the street! I can't imagine the efforts for those people who have to drive long distances for one simple test.
And while I know you did your best to accomodate my schedule and give me appointments later in the afternoon, I had, I belive three appointments where I had to wait a full hour to be seen by the doctor. It's difficult to believe that there isnt a practice in place that doesnt give the patients some sort of heads up that they wont be seen for a full hour after their scheduled appointment. Patients, including myself, take great pains to show up to their appointments on time in respect for the practice and the doctors schedule, but it doesn't seem like the same respect is given to those patients. I have seen a great number of specialists of all kinds in my dealings with cancer, and have never experienced such long waits with such frequency.
At the end of the day, I am just an old dog who doesn't want to learn new tricks, especially when it comes to my health. Historically, I have never considered myself a pro-active or very assertive person, but as I get older, and I learn more about how my body works and the signs I need to look for when something is wrong, I feel like I need to have a doctor who believes me and trusts my opinion. I shouldn't have to put this much effort into having action taken when I feel like something is wrong.
Both you and Dr. Lower have been very kind to me and I do appreciate the efforts you have taken to work me into those late appointments, and I do really feel that you both showed empathy towards my situation, especially in regards to my upcoming oopherectomy, which I will be having. I thank Dr. Lower for putting the pressure on me to have this done, as I have been putting it off for so long and it has put my health at risk.
I think that a huge component to the progress I make has to do with the comfort I feel with my caretakers, and its hard to replicate a five-year relationship. NO practice could do that! I miss my nurses, they were like sisters, and Dr. Romer has been there with me every step. I think I just underestimated how difficult it would be to part with what has become family to me, especially in light of these new developments.
Again, I thank you for the time you have taken with me, and will be here if you need to contact me for any reason at all.
*(just a note...she DID get a response from the doctor. The doctor's response? "I would not have changed the regimen. I felt I was doing the right thing."
That was pretty unbelievable to BOTH of us. ANOTHER reason I would not recommend this doctor! Doctor Romer got her in the following Monday, had her PET Scan and had a new chemo treatment ready to go. That's ALL she wanted.)
Ok, you're probably wondering why the heading is FABLE. A fable is a story that has a moral. The moral to THIS story? Be proactive. Not just with your OWN health, but with your loved ones too.
Melissa WAS proactive. She tried several times to get through to this doctor that things were getting worse. But the doctor didn't listen. Because the doctor didn't KNOW Melissa. Dr. Romer did. The other moral is, if you have a doctor that you TRUST, stay with that doctor.
I know in my heart that even if she had been with Dr. Romer, her time was short. BUT I would have taken a few more months...even a few more days.
I also think it is interesting how POSITIVE her letter was in light of the seriousness of what was going on.
I miss her EVERY. SINGLE. DAY. Sometimes I just need to share her wisdom. And she was full of it....she lived it every day of her life.
Some family news - Aunt Helen, who got Melissa into the Scrapbook Weekends (with Stacy and Jami) was just diagnosed with breast cancer. Invasive ductal carcinoma, just like Melissa. She had a double mastecomy on Thursday, no lymph node involvement, Stage 1.
Very good news.
Donny is coaching at Fairmont with Melissa's good friend, Andy (Coach Rock). They had a seven on seven tournament at UC this week. We both know Melissa would have been there watching - probably would have taken the day off to spend with her dad...Miss those things too....
And of course can't end a post without updating on Fort's nephews...she would for sure!
I went into the living room and Drew climbed up onto the recliner (where I sit and read the paper), picked up my reading glasses, grabbed the newspaper and started READING...see how important MODELING is????
I have the kids on Wednesdays...they LOVE to help Pamma around the house!
This picture of Drew reminds me SO MUCH of Melissa...we have very few pictures of Melissa either alone OR not making a face. Drew looks a lot like Fort did when she was that age...Max looks more like Nick did when he was little (and of course they look like they're mom too!)