Well, I have been wanting to get this done for some time now... an update.
I started chemo treatments on June 12th. I go every two weeks assuming that all my stats stay on the go-and-go. I just got my second on on June 26th (this last Thursday).
The first one included my port surgery on the same day which I do not recommend for anyone else. To cut down on the work for me I am going to copy another email that my Mom wrote to some of you that tells some of the story...
Hello All,Well, it has been a rather difficult week for Danielle. Tuesday she had her mugascan which is a test that measures the strength of her heart muscles. I believe this one was a baseline test as one of the four meds that make up her chemo cocktail tends to affect the muscles that surround the heart. That was relatively uneventful. However, on Thursday, I took Danielle to Naples Community Hospital Radiology Dept. for the implant of the chemo port. We arrived at 7:15a and Danielle did not go into surgery until sometime after 9am. It was not a good experience. The staff there is not exactly professional let alone compassionate or slightly mindful of good patient care. Although Danielle was reassured that the experience would be very similar to when she had the node biopsy with regard to sedation, this was NOT the case. She was not sedated at all prior to being wheeled into the OR. Basically once they had her arms strapped down and a sheet over her face, they administered a local anesthetic and did give her a little something in her IV to calm her. But, she was wide-awake throughout the entire procedure and VERY scared. The entire process was very upsetting and could have been much better had the nurses, etc. just explained the process and expectations to her. Chock this up to yet another reason NEVER to go to NCH!! (Except if you go to the NCH Day Surgery. We have had wonderful experiences there, but the main hospital leaves a lot to be desired :()
The port was implanted just above her right breast. Just a little before noon, we finally walked out of NCH and decided to go to a nearby Greek restaurant so Danielle could get a cup of her favorite chicken lemon soup -- and catch her breath before getting her first chemo treatment. Paul was at Naples High School working on a summer project and joined us for lunch, which was great! After some hugs, tears and deep breaths, we ate some lunch and felt a little bit better. Within the hour we arrived at Dr. Morris' office for her first chemo treatment which went well. Danielle was worn out and ready to go home!
Zane's Nona (Paul's mom) came from Palm Beach to stay with Danielle, Paul and Zane for the long weekend, which was perfect! So while Danielle was making it through a very busy and emotional Thursday, Nona took Zane to his great aunt Rae's in Bonita to go swimming and have a fun-filled day.Thursday did end with some good news -- Ben (Danielle's brother) and his girlfriend, Rachael are in the process of moving from Boone, NC to N. Conway, NH by July 1st. Ben and Rachael flew to Conway on Wednesday with the mission of finding a home to rent and Ben had a couple job interviews scheduled. (Rachael has already secured a teaching position at Madison Elementary School!) Thursday evening, Ben called to say he and Rachael had just found their dream house! It looks out over a lake with the mountains behind -- hardwood floors and just perfect!! And, he was offered a job at his first interview! It is amazing to me how life's ups and downs can somehow keep an even keel -- sometimes!
The implant site for the port has been painful for Danielle and she woke up Friday with a lot of discomfort and slightly nauseous. Paul took her back to Dr. Morris' office for her first neupogen injection. Barbara, her nurse, showed her and Paul how to give the injection as Danielle will be doing this herself on a daily basis. While there, Barbara checked her dressing covering the incision for the port implant. She was appalled that the dressing was not even covering the incision and it was basically wide open! For someone whose immune system is highly susceptible, this was not good! Needless to say, Barbara put a new dressing on and asked Paul to keep an eye on Danielle's temp for the next few days.
In the meantime, Zane developed a bark of a cough, hoarse voice and sore throat! He has the croup! Paul took him to the pediatrician Saturday morning and left with some meds for poor Zane. He is doing better today. But, Danielle is very tired and nauseous. She feels so tired and weak that she doesn't really want to stand up. Her hands and feet are achy too. We are all hoping that by tomorrow, she will start feeling better!Overall, I think we are all glad this week is over and behind us. Danielle should be feeling a bit better every day. Zane is on the road to recovery. And, Ben and Rachael now have all their ducks in a row ready for the big move July 1st!
Best to all and Happy Father's Day to all the great Dads out there!!!Much love, Kim
So sorry if this all seems jumbled. All sorts of fun things happen when you copy and paste!
Well, so the surgery was a terror. I was not completely awake through the whole thing. More like in and out a bit but it was not like anything I have experienced before! The terror now of the whole thing is that I will have to go back on day to get this damn thing taken out!!
Well, so I was pretty sick for a whole week after the first chemo. This most recent one they gave me a different drug to battle the nausea that pairs up with a steroid. This has seemed to do the trick! So far so good! I have felt totally zapped (I also have a sinus infection on top of it... this damn immune system!). It is like I kind of have a flu of some sort... VERY tired and VERY achy. It has been great having Christy (Paul's Mom) stay with us during these times because I would not be able to take care of Zane for a length of time for a couple days following the chemo. I just get too tired and unable to think or focus.
I am still taking the Neupogen shots every day, thanks to Paul. He has REALLY become a pro at giving me the shots. I don't feel them that much anymore and really that is more Paul because he has found the technique. I am so lucky to have him!
We met with a radiologist last week and we REALLY like her. She is so nice and easy to talk to. The plan for the radiation will be after my last chemo treatment we will wait about 3 weeks and then start radiation for 3-5 weeks (depending on what the scans report at that point). I will be going in every day Monday - Friday for the radiation. The worst part will be the constant driving back and forth! Arghh! The treatment itself I guess will only take about 15 minutes each.
And now on a much more happier note... the boy!! He is doing so well and just growing up so fast! He is talking up a storm and is absolutely obsessed with tools. It is the first thing he does in the morning and the last thing he does before bed. His hammer, screwdriver and now a sander are never far from his finger tips!
And thanks to his Aunt Be, we have an Obama-Boy on our hands! Check out his heart-throb!
And we have WORMS!! Yes, worms! Part of my birthday present from Mom and Pete was a worm composting bin! We got the worms recently and set it up! Zane loved looking at them but would NOT touch them. I was kind of surprised!
So every time I think of writing to the blog lately I feel terrible because it is such "medical news" in this household. It is unfortunate, but that is what is going on. My camera snapping techniques have wandered. The energy to run for the camera is not quite there. AND the patience to upload those darn videos (they take so long!) has not surfaced too much. They really need to make that easier!!!
Love to all of you and thank you to SOOOO many people who have sent their kind thoughts and prayers. I have not been able to thank everyone directly for their kindness, but know that I do thank you dearly!