Well, I've been away for quite some time, just grabbing a quick look and post here and there and trying to keep up.
I had success getting my referral to Mayo Clinic after all, but my medical group would only authorized 1 visit with 1 oncologist. When I told Mayo that, they said that was fine and asked that I have updated CT's and bloodwork done locally. That was a snap.
Then I had to get copies of all my medical records, CT scans, results, and biopsy slides. I finally finished that yesterday. Just in time. My appointment is scheduled for 7 am on Tuesday (Nov 9) morning.
My brother decided to drive me there (such a sweetheart) so that my husband Jim could take care of our son and make sure he got off to day care and school. Seeing that my brother and Jim don't get along very well, that is a big step for both of them. My brother to offer and Jim to agree. Kevin thinks it is great! A chance to be just with Daddy and do "guy" things without Mommy around for a couple days (I'm more the disciplinarian).
My brother being the type of person who is always thinking about what else we can do to take up time, suggested a Bon Jovi concert that is in Racine, WI Monday night. This is a small venue and only one night. We plan on driving most of the way and seeing the concert, then driving on to Rochester, MN after. I hope it doesn't tire me out too much.
My Univ of Chicago Onc sent me a letter that said "the patient and I agreed" that it would be good to move her to symptomatic care and it would be completely reasonable". So he more or less will do nothing further unless I get some symptoms of CC again, which by the way have come back. My problem with that is that I don't want to go back to him, and since I have the appt. with Mayo, I want to wait to see what they say first.
The CT's done for Mayo mentioned a small area of fluid build-up that they thought was NOT ascites, but was unsure what it was exactly. And all the other tumors have grown again in 2 months, and grown new ones. That was 3 weeks ago.
Now I have a slight cough, I have lost about 20 pounds in 3 months (which for me is a good thing, but not a good way to do it). I have pain in my right side, which gets worse if I seem to be on my feet a long time, or "overdo" it. Then Halloween night I started with a fever that reached 101 before I finally took Ibuprofen which brought it down. I went to work on Monday, and saw my PCP. He thought the fever was the cancer doing something and since my upcoming appt. at Mayo, he didn't want to do anything. He said my lungs were clear (I didn't have much, if any, of the cough then either) and the pain was only minor when I took a deep breath.
I stayed home from work on Tues with the fever going up and down when I took meds, now switching to Tylenol so it wouldn't upset my stomach. Partly the reason for weight loss is that I don't have a desire to eat. Nothing appeals to me and when I eat more than a small amount, I feel nauseated, so I haven't been eating much unless I force myself to eat small amounts.
I fell asleep on the couch and was woken up with a 101.4 F fever again. Again more Tylenol which broke the fever, but I woke up with the bed and all my clothes soaking wet. My PCP finally gave in and gave me an antibiotic to take expecting that maybe if I had an infection, it would knock it out. The cough has become a little worse, and now the pain at night is sometimes unbearable depending how I sleep. I can't walk straight up without holding onto my side, and I still occasionally get a fever, now taking Tylenol if it gets to 100. I've taken 3 days of antibiotics so far and have 2 days left (Arithromycin - Z pack). Also due to the weight loss, my blood pressure was 104 / 68. Very low for me, so the PCP cut my blood press. meds down to only 10 mg. He wouldn't take me off completely yet for fear something else could happen because of it. The low BP was making me listless and run-down feeling (not to mention not getting enough nutrition). I also drink a Carnation Instant Breakfast every morning too. That still tastes good to me.
Wish me good luck at Mayo and on our trip up there on Monday. I'm hoping for some good news from them or at least a treatment plan instead of just waiting.