To my CC Foundation Family,
I am currently on day 5 of Heparin therapy following the diagnosis on MOnday of a blood clot in my left leg and a spray of small clots in both lungs. Today, my INR blood test (for the Coumadin) was at 2, which is the bottom of the 2-3 range it needs to be for me to go home. My doctor tentatively told me this morning, that barring something "awful" happening (doubtful it will) that I will be dismissed tomorrow to go home on just the coumadin therapy. I find myself having a harder time breathing when I walk....but I assume it is because my lungs were affected by the small blood clots. But, I get in four walks a day....a couple at least 4 rounds of 500 feet each (2000 ft).
I had an IV in the crook of my arm for the first two days....which was always sending off an alarm...and very uncomfortable. So, for a day, we discussed using the power port for my Heparin IV. It's still fairly new...implanted on April 29th and I had just finally been able to turn my head without discomfort. AFter I finally said for them to go ahead and access the port...I asked for the anesthetic cream to numb the area....which had to be ordered....with a rush (A rush in the hospital means that maybe they'll get it in an hour). It came in 45 min...leaving enough time for the Pikk team to still insert the port before they left for the night. When the Pikk team arrived, they discovered that the nurse had applied the anesthetic cream to the incision line...not the port area....so there went the numbing. Then the Pikk nurse couldn't find the 3 dots...and commented that I had an old style port without them. (No, I do not have an old style....this definitely HAS the raised dots). She finally decided to put in the needle....but it didn't go any further than the layer of skin. Then...after a lot of pushing and prodding to try to find the three dots again...she gave up and tried it again anyway...and it did finally go in. (Hurt ) They covered it...finished the procedure with the Tegaderm bandage....which was the cause of burning for the next 24 hours....I am sensitive to the adhesive. They finally changed to a different bandage the next day....and that finally ended the pain I had from the burning of the adhesive.
Tonight, I managed to get the tubing of the port IV tangled under the rollers of the IV pole while standing up to hug someone...and pulled hard on the port IV insertion area. Now, we are watching to make sure it isn't leaking the fluid into my tissue. Oh LORD...I hope I didn't dislodge that port. The Pikk team member checked it before leaving for the night and thought it looked okay...that the needle was still in place....but it needed to be watched.
Since I only had one infusion of the first round of chemo, my Mayo oncologist has mentioned that I will probably need to just start over. I'm bummed!!!
Still weighing the options on where to do chemo ....not going back to the local oncologist where I had the first chemo. My choice is to either have it done here in town at a different chemo /cancer center with my Mayo oncologist running the show from Mayo at a distance...or us driving back and forth to Mayo for chemo (3 hours one way). My Mayo oncologist was discouraging me from doing the later when I spoke to him for a few moments this afternoon. He was concerned for my comfort....but frankly, I"m concerned for my life after this blood clot event....where the oncologist had several chances to catch the clots far earlier....but he misdiagnosed one time...and then he didn't come to the chemo room (he was only 15 feet away) when I had trouble with breathing and chest tightness. (We think that is when one blood clot moved into my lungs). Then, he failed to come out at the end of the chemo to check on me, so I left there believing what I was feeling must be normal side effects of the chemo. I'm soooo mad...and now scared all over again.
I have NO idea what to do about where to have the chemo. Someone suggested talking to a hospital social worker...who then gave me the name of a cancer nurse navigator....but she did not call me back today. It makes me crazy!!!
"Just for today, I can get through anything." I'm a cancer survivor, not a doctor. The opinions I state are my own, based on my personal experiences. As always, talk to your doctor about your concerns and treatment.