Round #2 of Doxil in the Books!

Well I spent the entire morning at the cancer center at Bergan Mercy today. I did the normal routine of getting my vitals read, having a barrage of questions asked of me (What is your pain level? Any nausea or vomiting? Any shortness of breath? Pooping and peeing okay? Any constipation or diarrhea? Any rashes? Any numbness and tingling anywhere? Any falls or balance issues? Any swelling?), then they access my port and flush it, draw blood to fill two tubes for blood counts, and then flush it again and leave an 8 inch tubing attached to my port that is held down by a thin, clear bandage about 5″x6″. The blood is sent off and I cannot get my chemo until the blood results are back and have been reviewed by the doctor. During pre-COVID-19 times, it would take up to an hour to get the results back because they are so busy. However, the hospital is practically a ghost town right now, and I got the first part of my results back in 10 minutes this morning. Everything came back looking good. I then see a resident (because Bergan Mercy is CHI Health….and teamed up with Creighton University). I get a new resident every time because they rotate every 4 weeks. Sigh. So I have to tell my history to the resident, who then recites it to the doctor in front of me and then gets quizzed. I sometimes feel for those residents getting grilled. Sometimes I don’t. It depends on how their bedside manner was with me during their interview with me. Some of them see me as a patient…some see me as a diagnosis and not a person. I am not a pathology report. Rich has gotten a kick out of me calling some of them out on their bad behavior early on, Some of you may not know this about me, but I was a registered nurse in the Air Force a million years ago. I was stationed at Scott AFB, Illinois, which was a teaching hospital for family practice doctors. I have dealt A LOT with interns and residents. I hesitate to tell you what procedures I have talked a “baby” doctor (that is what we called them because they are dr.’s but don’t know what they are doing yet) through on the labor and delivery unit. Really. It would scare you. Then I am sent with a my orders and patient stickers up to the first floor to go to the infusion section of the cancer center (my oncologist is in the basement – kindly called the “lower level” by the soothing female robotic voice in the elevator). I am greeted by a nurse and I sit in a reclining chair and get the show on the road.

If you ever have to go through this craziness…or know someone who does, especially for women, it is helpful to have button down shirts. I didn’t really have any until I started chemo. It is much easier and more modest when accessing your port to be able to just unbutton a few buttons. Granted, just like during childbirth, modesty really just goes out the window. But access is key and it is easier with shirts with buttons up top. So I didn’t really understand what a port was until I was in the holding area to get mine placed and a wonderful nurse did some patient teaching with me while I was waiting to go back to surgery. I thought I would share this info with you. My port is in the upper right side of my chest. It really should have been a few inches higher but let’s just say I am of German descent and somewhat busty…and gravity took it’s sweet way with me when I was upright versus laying flat on a table having it inserted. Ah well. I don’t know any different, so I live with what I have. The port is about the size of a quarter or a coca cola bottle top. It has three raised dots within the circle that are shaped in a triangle. The port is maybe 5/8″ thick. Mine is a dark blue or black. Rich asked me the other day why it looked bruised because it had been 3 weeks since it had been accessed. It is really close to the skin and with my lily-white skin on my chest, the coloring shows right through my skin. You can even see the three little bumps on the port. The port has a long tube (catheter) connected to it that goes over my right collar bone (all of this is under the skin) and then enters one of my main blood vessels on the right side of my heart (superior vena cava). The catheter sits right at the edge of going into my heart. When I had my port placed I was consciously sedated. I had a lot of drugs on board, but I was awake. It was not done in an operating room but in a radiology suite. A radiologist did the surgery. The hardest part was laying on a very narrow, hard table. You literally don’t have anywhere to put your arms. The procedure needed to be done there so they could scan me and make sure everything was straight and placed where it belonged. I have two incisions: a two inch incision on my chest right above my port site, and then another 1.5″ incision on the right side of the base of my neck where it meets my shoulder. The incision on my neck was the one that bothered me the most. Luckily I had a good friend who had had the same outpatient procedure the week prior and was able to tell me to have an ice pack and Tylenol ready. It was a life saver! So I am a visual person…the port reminds me so much of Thanksgiving turkey prep….where you take slices of butter sticks and tuck them just under the skin of the turkey before you cook it to keep it moist… yep, that is what I am. A big turkey. {smile} The port looks like the butter pats but is round. Anyhow, when they access the port, they have a needle which goes in the middle of the triangle of dots. They stick the needle in perpendicular to the port and have to press pretty hard as the plastic holds the needle in place while they then secure the tubing attached to the needle and the needle with the large sticky clear bandage. (then I can button up my shirt and have the tubing peaking out through a space between buttons. They then flush the port with saline to make sure there are no blockages in the tubing outside or inside my body and then draw the two tubes of blood. Then it is flushed again. When I go up to the infusion center, they flush it AGAIN, push some meds slowly through the tubing that is supposed to stave off the nausea for the next 48-72 hours, and they I have two bags of fluids hung. One of them is just plain saline that the line will change over to automatically when the medication is done. Each oncology infusion nurse has several patients plus charting to do, so they may not get to me in time for the medication bag to be done. We don’t need air in the tubing since it goes right into my heart! The oncology pharmacists don’t mix our chemo meds until we are cleared by the doctor and are in the infusion center, so sometimes we have to wait for our mixologists. I get a small bag of meds IV that are steroids. It helps with the nausea for the first 72 hours as well. As Doxil has a lot of nausea involved with it, I also take pretty hefty doses of oral steroids for the next three days at home. My Doxil looks like Hawai’an Punch. That is what my favorite oncology nurse and I decided today. It takes an hour in go in. I got a bit of a surprise today and also got Zometa via IV. It will only be given every 3 months and is a 35 minute IV drip. It has some icky side effects but usually it only happens the first time you take it and only in the 24 hours afterwards. I may be lucky….fingers crossed. Otherwise, I may be spending the day in bed tomorrow. We shall see. The medication is supposed to help move my calcium in my bloodstream to my bones and form a kind of ‘cement’ around my bones to help prevent further damage to my L2 vertebrae that has a metastasis in it – so it won’t further deteriorate the bone structure and hopefully prevent other bone mets. I asked the doctor if I should take calcium and he said that was a good idea along with vitamin D3 (it helps with absorption of the calcium). I ordered it from Amazon.com from the waiting room. It will be at my house on Saturday. So when all the meds are done, they flush my port again with saline….then flush it again with heparin. Then in the big infusion bay (although not too crowded today), I unbutton the top of my shirt and the nurse carefully pulls off the thin, sticky, clear bandage on the top portion of my right breast. This is no easy feat with surgical gloves on, let me tell you, as it is about 5″ x 6″! Then she uses one hand to stabilize my port, as it is 3D on my chest…it pops out (again, envision butter pats under turkey skin), and pulls the needle out. A bandaid goes on over the port that I leave on for the rest of the day and then I go home. Done!

I don’t know if I have ever mentioned it, by the majority of Bergan Mercy hospital looks out over two of Omaha’s largest cemeteries. It is kind of depressing to look out the windows and look at cemeteries. I was actually going to take pictures of it today to show you, but the bare trees in the grass along the parking lot of the hospital had all filled in with beautiful blossoms and they really caught my eye more today and almost blocked my view of all the head stones. They were beautiful and their petals were cascading down with the breeze. It was really pretty. Visitors are still not allowed to come in but the nurses are great. It seems like the patient load is lower, but that may be because I am coming on a different day now. When I was on Gem/Tax, I went on Tuesdays…but that was pre- COVID-19. Now I go once a month on Thursdays. My favorite nurse has a daughter the same age as Lily. We lament over extended learning and teenage daughters. She stood and talked to me for awhile today, both of use wearing masks….it really forces you to look into people’s eyes. You can’t see much of anything else. The infusion was the easy part. Now I have to make it through this next week. Then hopefully I will be feeling better like last time. Fingers crossed.

Last but never least….my ‘thankfulness thoughts’ for those people in my life who are being disciples to me. I feel I need to mention you because I don’t want you to think you haven’t touched me in a special way. I want you to know how much I appreciate you reaching out to me. I received a beautiful bouquet of flowers from my Godmother, Maile Doyle, this week. I got a super cute keychain from a dear friend, Kelly O’Donnell, of our Blessed Mother and St. Elizabeth. I received a GORGEOUS prayer lap quilt from someone I think I could easily be very close friends with….Paula Buck. She and I talked for quite awhile in my driveway (at least 6 feet away) about all sorts of things yesterday. Paula is an AVID sports fan and I love picking her brain because I think she very much has a brain like my Tim’s….that can remember lots of stats and names, etc. It is impressive. I can remember birthday and anniversary dates. That’s my super talent. Stats, not so much. My sister sent me some cute masks for Rich, Lily, and me. In the same package is a crocheted panda hat with a matching crocheted panda mask. It is hot…but adorable! (Tallinn was not impressed.) My brother, Craig, has made me laugh a lot over the last week as I received a Christmas card (with letter and photos) and a birthday card from him. As they were months late, it made me laugh. I have received cards from all over the country this week. I have a friend that is also battling cancer in Houston (we met in Norway 13 years ago). Fiona sent me some lozenges for nausea and some chapstick. We check up on each other every other day or so and she has quickly become a soul sister. It really means a lot to me to be able to connect with others who know intimately what I am going through. This goes for Todd Bancor and Kathy Trudell here in Omaha, as well. Blessings…all three of them. I want to mention someone I haven’t before…Kathy Martz. I often say you never know who will stay in touch with you when you move away…leave a job, etc. I am always surprised that it isn’t the people you think it will be. I worked with a bunch of really great people when I worked at Bellevue Public Schools in Bellevue, Nebraska when we first moved to Nebraska from Norway. I met Kathy Martz when I worked at Fort Crook Elementary School as the school secretary. She was the BPS school mail courier. She would travel in a BPS white van filled with boxes and what we call in the military “holey joes”…those larger manila envelopes with lines on the outside and red twine that twist around circles (the size of ports!) that hold them closed. They have holes all through the envelops so you can kinda see what is inside. Kathy traveled between all the schools in Bellevue exchanging the mail between buildings. She is a St. Louis cardinals fan and a Patriots fan. I saw her for 5 minutes or less each work day for the 2 years I worked there before she retired. We just hit it off and have stayed in touch. She has sent me several cards with dogs on them that just make me smile. What a kind gesture. I so appreciate it! I also recieved a letter from a dear friend (also from Ft. Crook days), Lois Dalton. She was a 5th grade teacher there and I just loved her. She made me laugh everyday and I have learned al lot about my Catholic faith from her. Love you, Lois! I have tons of people contacting me over FB chat and texting me. Thank you. It is easy to feel forgotten when you have to go through this journey on your own due to the pandemic. I have often felt that I am “out of sight, out of mind” to a lot of people I thought I was close with. But I realize this is hard on all of us and we all handle what is going on in our world in our own way. I truly appreciate those who have reached out to me. I stood in the waiting room all alone this morning…there weren’t even any other patients there…and looked at my phone and had several texts and messages wishing me luck today. I didn’t feel so alone. It is nice to have an army at your back as you head into battle. Thank you all so much!

Well, I hadn’t planned to write a novella today, but I guess I needed to. If you are still with me at the end of this diatribe, I thank you for sticking with me! Tallinn is literally laying on my feet because it is our snuggle time…plus he sticks to my side a bit more after I have just had chemo. (It may also have to do that he was caught getting in the trash and knows he is in a spot of trouble!) I was able to go on a 3.5 mile walk with the family tonight, so that was nice. I have been averaging 5-8 miles the last two weeks, as the weather permits (and it has been gorgeous). My doctor gave me an emphatic “NO!” to me going back to Mass this Sunday, as my Church is opening up again. It may be awhile before I can get back. I am cleared to walk the dog and that is it. Sigh. At least I have that. I love getting out into the fresh air. I hope wherever you are, you are enjoying the same! Below are pictures of the window art in the cancer center waiting room. I loved the message! The last one is of me in the infusion chair. Stay safe and God’s blessings on all of you!