I had a pretty busy week, starting on Wednesday, September 10th. I took the train to Pittsburgh for a working vacation. On Thursday, Mary and I drove around the city looking at potential apartments and neighborhoods for my relocation next Spring. That was very productive. On Friday, I went for a consult with a potential local oncologist whom I hoped would meet my rather rigorous standards. He didn't; it was a big waste of time that could have been avoided had he actually read the letter I wrote him about my needs. The day was redeemed when we spent way too long at the T-Mobile store upgrading my phone. I'm pretty happy with my new toy, thanks to Sarah's savvy assistance. Everyone needs a 16 year old for such life altering events.
Saturday was an Adenoid Cystic Carcinoma Organization International (ACCOI) patient meeting, where five ACC survivors and their family members met over lunch. It was an amazing group of incredible fighters. We shared our very diverse stories, treatments, doctor recommendations and tips for navigating the treacherous waters of an unpredictable and brutal cancer. There was humor, hope and priceless information, not to mention newly made friendships.
On Sunday, I took the train to Baltimore and met up with an extraordinary ACC survivor, Michelle, whose feisty strength and grace was contagious and humbling. I reported to Hopkins at six a.m. Monday morning for a cryoablation (using freezing gas instead of radioactive heat, as with RFA) on a left tumor in my pleura (the lining of my lung). Everything was going swimmingly, as I shared my preferences for anesthesia drugs and settled onto the familiar OR table. The next thing I remember is waking up very nauseous, demanding a vomit bin and a hit of dissolvable Zofran. Then there's a gap. I woke up again, feeling much better and was told that Dr. Hong was going to admit me due to a complication that occurred in the OR and because I "looked awful." I forgave him and asked about the complication. Apparently, I bled into my lung, which can be hard to control, serious and just not good. I went into a coughing fit, under sedation, and coughed up most of the blood. I assume I wasn't getting zapped at that particular moment. Whatever I swallowed came up during the gap in my memory while in recovery. The only evidence I had of any of this was my already chronically sore ribs were very painful from coughing. How I avoided a pneumothorax (collapsed lung) during this drama is beyond me. Thank God I was at Hopkins, is all I have to say.
Bleeding is an extremely low risk for these procedures. They happen so rarely, patients aren't even quoted a percentage when being told of the risks. Truth be told, I may have brought this on myself. You know when the pre-op nurses call to tell you to stop taking any NSAID or asprin products 7 days prior to surgery to avoid bleeding? Well, I kind of forgot about that until 2 days prior to surgery. Note to self!!
The ablation itself was successful, notwithstanding the added adventure. I was discharged the next morning, took the shuttle to my hotel, packed my stuff and caught the 2:46 train to Newark. Pretty productive week, right? Because the pleura is a hotbed of nerves, avoiding nerve damage is nearly impossible. I feel pretty sore and since the ablation site is just above my heart, I will be tucking my seat belt under my left arm for a while. And, of course, my left rib cage is very unhappy. Could be worse, lots worse.
So what's next? My right lung seems to be behaving. My left lung is the problem child. Near the site of this ablation, cancer is causing a thickening of the pleural space such that an ablation isn't the best option for treatment. Radiation would be able to treat the area all at once. So I'm waiting for Dr. Hales to call with a treatment plan. Assuming Hope Lodge has room for me, I'll be spending some time in Baltimore, probably next month. Aside from the obvious frustration that another battle is in sight, I'm just hoping that the net nerve pain at the end of it all is not worse than it already is. Now that I don't work anymore, I have way too much to do with ACCOI and planning my move to Pittsburgh.
Keeping my eye on the big picture, today is yet another milestone for me. I was first diagnosed with ACC 14 years ago today, about a year after moving to New Jersey. Just like ablations, there is no prize for surviving another year. The reward is staying alive to fight with others for knowledge and a possible way to turn this cancer off. In between the battles, there are fun times to be had, friendships to forge, and bridges to cross. It's not like I need another T-shirt anyway.
Kathy
CANcer + HEALth = CAN HEAL
.bmp)
.JPG)
Hello,
ReplyDeleteMy name is Dr. Dana Hansen and I am faculty at Kent State University, College of Nursing. You may view my faculty website page at http://www.kent.edu/nursing/facstaff/bio/~dhansen1/ .
We are contacting you because you are listed as the contact person of the blog. My research team and I are interested in learning about the family caregiver’s experience with reading their loved one’s illness blog.
Therefore, we are conducting a research study and are inviting you to participate. Below are details of the study. You can also find out more by going to our study website: (will be added once website developed).
If you are not the family caregiver of the person with a serious illness, please forward this information to someone who is.
Family caregivers are eligible to participate in the study if:
• Both you and your loved one are 18 years or older
• The blogger/ill person must have a diagnosis of cancer, congestive heart failure (CHF), chronic obstructive lung disease (COPD), or human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS)
• The blogs must be written in English with a minimum of 1 posting per month
• The family caregiver must participate in the blog by responding to the blog or reading the blog
Procedure and Time Commitment:
The family caregiver should go to our website where they can click on an icon labeled “participate in study”. The family caregiver will be asked to read and agree to a consent form. If they choose not to participate after reading the consent form, they click on the icon labeled “I disagree”.
If the family caregiver agrees to participate, they will complete a form asking their name and how to contact them. Then a member of our research team will contact them to schedule a time to conduct a 1-2 hour interview where we will ask questions about their experience as a caregiver interacting with their loved one on an illness blog. A nominal onetime payment of $50.00 will be sent to the participant once the interview is complete.
Participation is voluntary, refusal to take part in the study involves no penalty or loss of benefits to which participants are otherwise entitled, and participants may withdraw from the study at any time without penalty or loss of benefits to which they are otherwise entitled.
Thank you for your time and consideration,
Dr. Dana Hansen
Dana Hansen RN, PhD
Assistant Professor
Kent State University, College of Nursing
113 Henderson Hall, P. O. Box 5190, Kent, OH 44242