Wednesday, November 26, 2014

You know it is not good when...


You know your in trouble when they put your "wrist" bands on your ankle and start talking about putting IVs there as well. 

It doesn't help matters when in 5 days you have had 3 IVs blow with about 10 sticks to get the three, and you end up looking like this.

      
Last Friday I ended up in the emergency room with really bad spasms. I was admitted and released yesterday. It is odd to loose time; I didn't realize how long I had been in, until I got home and realized the date.  
After all the sticks and failed attempts to get my veins to cooperate with the staff; it was recommended to me by the docs to get a port. We had talked about it before and decided against it. Now it really wasn't a matter of choice.

Having a port placed is scary at least it was for me. I don't know what I freaked out about the most, what they where doing to me or the fact that my b/p went to 160/122. l have never had a blood pressure that high, guess it speaks to the fear and pain.

The port is in my upper right chest, with a second incision in my neck. The catheter from the port runs into my jugular vein, which is frightening in it's own way. I have learned there are different kinds of ports, however; a power port is best. It allows for strong drugs like CT contrast dye, blood draws, and IV meds can be given. The guess is that it will stay in for at least a year. I know I will get use to it with time. Patients is not one of my finer skills, urgh.

I am just glad I didn't end up having needles in my feet, that would have stunk. But this thing in my neck is scary in it's own way, yet a comfort to know the multicolored arm will hopefully heal from not being stuck all the time.

Basically the last couple of weeks I did more than I should have and that is likely what brought on the spasm and medical needs out weighing wants, sometimes it is a suck it up and do it situation.  My silver lining is a nurse I respect who was an ED nurse and now works in specials was there. Seeing her smiling face helped, so thank you Anita. Thank you to Dr. Renvil who placed the port and was compassionate toward me, and comforting to my fears.

There are so many people to thank from the ED staff to the residence and doctors taking care of my on the floor. The nurses and aides where great and comforting. There are a lot of things that could have been worse, thankfully I am home and able to post this. That is my thankfulness this thanksgiving, being home. 



 A take away from this, is that the pictures of a spasm happening in my phone; helped the docs see what it is like to have spasms. I made myself lists of questions to make sure I understood how to care for it and what I need to be on top of for the next year or so. I will be Okay it is just going to take more time than I would like.





Wednesday, November 12, 2014

The Journey Continues

At this point if my count is correct I have had about 5 or 6 blocks since the 3rd surgery in August. I still get short of breath at times and have thankfully only had one major spasm since the 6th one. We know they can happen at anytime and really do not have to have something happen to set them off. I also know if I overdue it, I will pay for it, so that means maybe not doing everything I want too, doesn't mean things don't get done, it is time that it might take. I can live with needing a little more time. Figuritivly and in reality I want more than a little more time.

I want to see my son graduate college and see him be successful in life. I want to continue my personal work to help others in anyway that I can. I was a healthcare provider for 19 years and for awhile it really bothered me to loose my career. Sometimes I still get twinges from the smell of diseal or the sound of sirens, yah yah I was a "wacker" in EMS terms. Basically that means I got pulled in on my first clinical rotation with Franklin Fire Department. I remember them being so nice, and showing me a lot of good skills and a better understanding of the fire side of calls as well.

So now I know I can help others with various things, from speech writing to public speaking. To forming rallies and press releases. There are more things I know I can and will do, in fact I might be doing some of that right now, but you will have to wait and see. ((sarcasm or is it))  LOL

I am getting to spend time on the seacoast of New Hampshire, I love the smell of ocean air. I am grateful to my freestate family for creating "The Praxeum" it is a safe and warm place to hang out and work, teach, rest, and laugh. It is also a private club which makes it safer. I can say I am so proud of all the accomplishments of my friends and grateful to have them. You can't put a price tag on that kind of friendship. Sometimes blood relatives will not give of their heart as much to you as the family you pick. I picked my family and I would do it again. The Free State Project has and is the most amazing family I could ask for. Blood is not what matters. What matters is when things are at there worst, who runs and who stays. Who holds you through your tears, and hears your screams and runs to you not from you.

I hate to list people, I am always afraid of missing one, and with my "foggy brain" from the tamoxifen that is easy for me to do. You out there reading this, you know who you are that I cherish with all my heart.

I will go back on the 19th for a  review and most likely to schedule the next block. We hope that with time we will be able to stop the blocks, but for now the effort is to keep things in control so I can have some quality of life back. I get to drive now, tee hee. It might sound small, but when you have gone over a year dependent on others, to have the ability to just jump in the car and go for a ride means a lot to me. Don't worry, my providers and I discussed it, and worst case if I spasm while driving, all I have to do is pull over and call 911 while starting my emergency protocol.

I am better, am I 100%, no. Will I be, that is unknown at this point and too soon to tell. Thing is I am not worried, no matter how it all ends up, I can and will deal. I have done it before and will do it again. That is my strength in practicing what I preached to my son, finish what you start. I will never stop fighting for Liberty, but I will finish my 2nd degree and continue to help those up there fighting for my civil liberties in Concord and D.C.

Monday, November 3, 2014

The next step

Now we are working to get everything under control, in other words my body is having to learn to live with the reconstructed me. It can be a PIA, but I am alive and here. That you just can't top.

I had the chance to spend time with some awesome friends and a fellow survivor who is not only a fellow Dana-Farber gal but we had the same cancer surgeon, years apart. Of all the survivors I have met, she is the one I identify with the most. Maybe it is because of the connection to Dana-Farber and Dr. Golshen or maybe it is because we are alike in ways that make us both feel comfortable. We even compared work, some of the best information I have gotten have come from women who are willing to share. Women who are not shy about their bodies or their treatment experience. You can't put a price on piece of mind, but you can find it in the stories of others.


Tomorrow is a big day for me, I am about 60% done with my BSM degree, my classes restart tomorrow.  I am also having another rectus shealth block in the afternoon. At least that gives me the morning to get my school work done. I almost had a scary issue of not being able to pre-med for the procedure, but a good friend, "Sunshine" stepped up at the 11th hour and bailed me out. I am so thankful it is a hard procedure to go through. I can't explain how physically and mentaly taxing it is to have a near 12 inch needle pushed into your abdominal muscles. The benefit is easier breathing, less time getting short of breath, and we hope over time a perminant solution if not one that can be maintained.

A lot of people have told me they feel bad and I appreciate their compassion and concern. I am here to see my Son, talk to my Grandmother, and smile and laugh with friends. My plans to succeed in creating my own happiness and being prosperous are not derailed, I just pushed back the due date a little that is all. All plans need to come with contingency planning or you get blindsided. I have lived that and learned from it. My plan B and C are in order and I keep tweaking as needed. In the end I will succeed, just have to take one step at a time, and be prepared for quick turns.