Trusty Buddy

Last Monday, July 16, 2018, I had my last appointment (knock-on-wood, cross fingers & toes, pray continuously evermore...) as a cancer patient (but new SURVIVOR) at Huntsman Cancer Institute. I was there to have my six-year old trusty buddy vein port removed. Six years, I've been told, is a good, long life for Buddy Port; and although he has become a bit more wobbly in the past few years, he has never failed to give up blood enough for all the lab tests and to deliver meds needed for scans & MRIs ,etc. My tiny, overworked veins have been blessed, and every time I've avoided the multiple "sticks & pokes" from well-meaning nurses, my heart has rejoiced. So, it was with mixed feelings that Ness and I entered the hospital just before my 2:00 pm appointment. 

I had no idea what to expect. When Buddy Port was implanted, I was given general anesthesia, and I woke up to find him sewn into my body on the left side of my chest (normally they're placed on the right side). Dr. Carolyn made the removal sound much less "surgical", indicating it would be done under localized anesthesia and I'd be in & out fairly quickly, so I was a bit surprised when the radiology department called a few days before the appointment to go over my "instructions": no food after midnight Sunday, water or clear liquids up until 10:00 am on Monday, and someone needed to be available to drive me home. This sounded a lot more extreme, considering my appointment wasn't until 2:00! 

The waiting room was packed. (See what a difference early appointments make?) After checking in, we sat and started to wait...and wait...and wait. I was thirsty and hungry. A nurse came out to talk to a lady sitting near us, apologizing for the long wait and telling her that her husband was next to be taken back to surgery for his procedure - she didn't want the wife to worry that something had gone wrong. Ness and I looked at each other and wondered just how long this was really going to take. 

At 2:30, I was called back to the procedure area. I was in the first curtained-off "room" by the door. The nurse told me to put on the gown, but I could leave everything on from the waist down. When she left, she didn't pull the curtain tight up to the wall, so I felt exposed as I got changed. I backed up as close as I could to the wall, just in case anyone walking by peeked in, and got undressed faster than I ever have before. For a while, I sat on the bed, but my back started hurting so I sat on a chair. There was a guy next to me, who may have been homeless, talking to someone on the phone about borrowing some cash so he could "call a cab to drive him back to the motel". A parade of nurses, doctors, and social workers went in to talk to him, trying to convince him that they couldn't release him to take a taxi home - it needed to be someone who could be trusted to deliver him to his "home" and be available to contact if there was a problem later. I felt so bad for him. He told them over & over that he didn't have anyone like that he could ask. I felt so grateful for my own abundant blessings of family and friends.

The surgeon came in to go over the procedure with me. He asked about my INR numbers, if they were always so high. I was confused. I told him I had long ago stopped going in for weekly blood tests and taking blood thinners. He looked back at my lab results and realized he'd been looking at numbers from 2015!! I was just happy he hadn't cancelled the procedure over that "little" mistake.

The nurse returned to put in an IV for the anesthesia (Valium and some other local numbing med). After the first "stick" failed (Waaah, I was already missing my Buddy Port and he wasn't even gone yet!), she tried a tiny vein in my hand. I was ready, but the room was not. Poor homeless guy left to get his biopsy, moaning and crying all the way down the hall, and now new voices were heard from behind their own curtains. Curtain No. 3 was a man who had received a trusty Buddy Port to get him through chemotherapy and now needed pain meds for the incision. His wife was urging him to ask the nurses for some Tylenol, but he was resisting, thinking he could "handle it". Finally, he gave in. Curtain No. 4 across the aisle was a man who had lost a leg to cancer and was having some kind of procedure on his throat (not necessarily another tumor because his wife was telling every doctor, nurse, and aide that he had had a scan earlier that showed no more evidence of disease). He joked with those who asked how he was doing. "Fine," he said, "except that I don't have a leg," or "Fine, except I feel like my throat has been cut." Yes, I heard their whole life stories in a nutshell until someone somewhere turned on overhead music - oh, yes, thank you! I was getting very antsy. I had left my phone in my purse with Ness, so I didn't know what time it was or how she was doing or ANYTHING and HOW MUCH LONGER DO I HAVE TO WAIT? Just when I thought I'd jump out of my skin, the music played some simple chords and there was my Ed (Sheeran), singing "Perfect". I could have cried with joy & relief.

When the wait became unbearable again, I went in search of a nurse. On the wall at the nurse's station was a clock - it was 4:30!! No wonder I was bonkers! I asked the nearest nurse if she could tell my daughter that I was okay and that I hadn't been in to surgery yet and I'd been here since 2:00 and my girl has red hair and a black tee shirt on... She immediately said she'd go tell her. I shuffled back to my curtain and two minutes later, there's my Ness, looking just as relieved as I felt. "I didn't just tell her," the nurse said. "I brought her to you." Thank you, thank you, thank you.

Not long after, I was taken back to the procedure room. It was dark-ish and 63-degrees cold. The nurses were busy getting things ready.  They asked what my favorite color was, and when I said green, they switched on green fluorescent lighting. They asked if I'd like some music, and when I said my favorite Pandora channel was Ed Sheeran, they cheered! Ed sang to me through the entire procedure - I love him - what a guy!! I got a warm blanket, oxygen through my nose, and I did not feel a single pain through the whole surgery.

I walked back to my curtained room and someone brought me a cup of delicious apple juice, which I gulped down. Had to wait a little bit for my blood pressure to come up - it was way low for a while there. As soon as it climbed over 100 (104 actually), I was finally discharged. I felt fine, but I was starving. Grabbed some Lorna Doone shortbread cookies (shared with Ness 'cuz she was starving too) and out we went. We celebrated with dinner at Spaghetti Factory (which I paid for the next day, unfortunately, but it tasted so good!) and we were home by about 7:30. 

No more Buddy Port, but another great scar to prove he was there & had done his job well. Very, very well. Thank you for every pain you took away...it made such a difference in my cancer fight.

Best Update

July 12, 2018

REMISSION ACCOMPLISHED!

At last...an update to end all updates, literally.  In the past two-plus years, I've steadily gotten stronger and more "back to normal" than ever before. Happily, after the success of that 2nd round of IPI, I was able to graduate to having scans every six months instead of three. The nerves and doubts always overshadowed a complete sense of well-being, but over the years I've come to know my body, inside and out. No new bumps--though a small lump under the left side of my jaw was diagnosed as scar tissue and NOT cancer--and no other unusual pains or symptoms. I still struggle with my digestion and finally resigned myself to the fact that I just cannot eat some of the foods I used to. Giving up sugar has been my hardest challenge, but I feel so much better when I eat healthier. Don't we all?!! I still take my Creon pills at meals, and probably will for the rest of my life. They save me much discomfort and suffering after eating.

Last December, at my semi-annual scan report, Carolyn hinted that if everything looked good in 2018, I could be officially DONE. No more scans!! It was too wonderful to believe.  Dr. Grossmann was moving on to a new position in Florida (doing more research, which is where his heart was), so it seemed the right time. He had been such a wonderful doctor--I couldn't have asked for better. As Lindsey and I left the appointment with Carolyn, he came walking down the hall to tell us goodbye. He even hugged me! I was so proud of him for his promotion, but he had saved my life...and it's hard to let go of someone like that. Also, the office staff that Linds and I loved so much--Patti, Pam, and the others--were being shuffled around to other clinics and we missed these ladies who knew us so personally and laughed & cried at our joys and sorrows.  When the appointment was set for July 11, it seemed so long to wait--and who knew what could happen in seven months. But as is always the case, time flew by and here it was, the day of reckoning!

After waiting nearly an hour to see Carolyn or the new doctor, Dr. Voorhies, we were finally called back. Lindsey reminded me that over the years, we tried to ask for the earliest appointment of the day since it would be less busy. Ah, the things we have learned in the past 7 years!! As I sat in the hallway to be weighed and my vital signs taken (just FYI: weight 165.9--at the start of this journey, I weighed about 245; today's blood pressure 142/60, which was higher than usual because I was so stressed over our hour wait!--but at my first biopsy in 2011, my blood pressure was so high, Dr. Bradley almost didn't do the procedure), Carolyn came around the corner to wait by Lindsey. The nurse said, "You must be favorites for her to come wait for you to come into the exam room!" Not one to dance around the news, Carolyn took us into the room, closed the door, and said, "Well, your scans look great!" We all clapped and laughed and screamed hooray! I'm pretty sure all the people in the waiting room could hear us.

I had come with high hopes...and my new tee shirt.  I knew the scans would be okay. Carolyn immediately asked me to put it on, so I did...and here we are! She said she wished the back of the shirt said, "It can happen!" She also took a picture of my tee to send Dr. Grossmann because she knew he would be grateful for the news.

As we talked about my new life without scans and cancer worries, Carolyn said that she hoped I would stop in when I was in the area. She also mentioned that she has put me high on her list of "good responders to IPI". She wondered if I would ever be willing to come to symposiums to talk to patients about my experiences. She also asked Lindsey if she'd be willing to share her experience as a caregiver. We both said yes, and I really hope to do that someday. I love Carolyn and I'm so grateful for her years of friendship, compassion, and knowledge. She said that although I was now finished with scheduled care from Huntsman, they would always be my cancer team. As someone with a history of melanoma, if I ever have questions or concerns, she wants me to call her for help. It means the world to me to realize I never have to travel this path alone, whether I'm in remission or not.

Back out in the waiting room, I gave a high-five to Pam and to Patti. They too were thrilled. As we turned to leave, there was a sweet old man standing behind me with a huge grin on his face. "Congratulations on your great news!" he said. "I hope to be there myself someday!" I took his hand and told him that it CAN happen! If it happened with me, it can happen with anyone.

My last trip to Huntsman--as a patient--will be this coming Monday at 2:00 pm, where I will have my  wonderful, trustworthy, life-saving port removed for good. It should be a fairly simple procedure, even though it may take longer than usual because it's been in so long and they might have to "cut around some scar tissue", according to Carolyn. Eek! But I can do it, right?

I've done much harder stuff...and SURVIVED.

TAKE THAT, MY CANCER GOLIATH!! YOU LOSE...and I've WON.