WEEK 13: BYU Women's Conference and "Incision Issues"

On April 28th I made the spur of the moment decision to go to Provo to spend a few days with a couple of my old college "roomies" at BYU's Women's Conference. Me and RaeAnn Tolley have gotten together to do this the last couple of years, and had such a great time. This year Lori May was joining us. I haven't seen Lori in at least 15 years, so I wanted to go so badly this year, but I had no idea how I would feel. Monday I ended up kind of sick, but Tuesday I felt great, so I called my Dillon friend Murlene who was also going down, so I could catch a ride with her on Wednesday. Oh boy am I ever glad I did. RaeAnn and Lori and I had such a great time going to various events where we heard wonderful speakers and entertainers. It was so fun to get caught up!

Then I found out that there was another important reason I came to Provo. Saturday morning after Women's Conf., I woke up to a big wet spot on my PJ top. I called my nurse Vickie at her home (bless her heart, she gave me her cell number and told me I could call her anytime.) to let her know the wound was suddenly draining a bunch of watery stuff. She told me I needed to see the doctor right away. I told her, "Well, I just happen to be in Provo." She told me to be at the Huntsman first thing Monday morning so the doctor could take a look.

I ended up missing my ride back to Dillon with my friend Murlene on Sunday, but sometimes you gotta do what you gotta do! I decided I'd just go to my appointment, then ride the bus home. Monday morning Collin dropped me off at the Huntsman at 7:30 a.m. on his way to his first day of his new job. My doctor comes in, takes a look at my wound - and you just get all tingly inside when your doctor rubs his face, runs his fingers through his hair, and says: "Sit down, we need talk about this". Ooooh, not good! He told me if it had gone another week, it would have opened up enough we would be looking at the expander through the wound. So he said we had two choices: 1) Go into surgery and remove the expander (after all of the extra pain I went through to have the stupid thing put in - are you kidding?!) or 2) go into surgery, cut away some of the scar tissue, clean it up as best they could, stitch me up, put me on antibiotics for 2 weeks, and "hope I get lucky" (yeah, those were his exact words). Wow.

Needless to say I chose the smaller surgery. So a few hours later I found myself being wheeled into surgery at the UofU Hospital (since they could get me in way sooner than the Huntsman). My sister Barb came to be my babysitter, since they don't like doing surgery without some adult friend or family member there with you. After a few hours they let me leave, with 4 big "fishing line" stitches in my breast, along with a bottle of antibiotic horse pills! If I had been in Dillon when it suddenly decided to drain, I just don't know how soon I would have wanted to go running back down to Salt Lake. I could have ended up in big trouble! It was so dang lucky I happened to be in Provo right then. This incision has been such a nightmare. I have a few lovely pictures to chronicle my rocky road with this thing:

My first incision issue was a yeast infection! Yeah, a yeast infection! I didn't know those could just show up anywhere! When I saw Dr. Dickson for my Chemo Consult, he told me what it was, and to start putting Monistat cream on it. You can see how the incision is red & blistery looking, and there is a slight opening there close to my fingers. That spot, as well as another spot behind it had been a little opened up, and draining green goo, but seemed to be finally closing up. I started putting Monistat cream on it to clear up the Yeast. When I came back the next week for my first Chemo, the PA looked at it and said the yeast didn't seem totally gone, so he prescribed an oral pill for yeast infections. By that time, the one opening had started to open up a little more. I started covering the wound with gauze & tape.

Then on April 22nd when I saw Vickie, the week of Collin's grad- uation, as you can see, the Yeast infection was gone, but the wound had opened up more. That's when putting Silver Sulfadiazine on it twice a day started. I did that routine for a week. This is what the wound looked like in about the middle of that week. I found a few undissolved "dissolving" sutures floating around in the wound at one point, and grabbed them with tweezers, and snipped them, with the hope that would help it finally heal up. No such luck! It simply would not heal. That's one of the negative effects of Chemo. It effects your body's ability to heal. They usually try to avoid surgical procedures when a person is on Chemo. Now I fully understand why. By the time I saw the doctor, it was even more opened up, more deep, and started to have a few little green patches.

Then my trip to the doctor the week of Women's Conference when they decided to finally stitch the stupid thing up. And, I'm happy to say, as you can see in this pic - I got "Lucky" - it healed up just fine, and I guess thanks to the huge Antibiotic "horse pills", no infection set in. It has been such a roller coaster ride. I ended up with these stitches in til May 28 - a full month! So 3 and a-half months after my mastectomy, I was finally done with stitches. That has got to be a record! I often compared my frustration with the incision problems as the first hurdle to clear in a "Cancer Race". I took off from the starting blocks in my big race, and promptly hit the very first hurdle, landing flat on my face. Rules in this race: go back to the starting blocks. So, off I go again - then - yep! I hit the first hurdle again, landing flat on my face once more. I felt like I kept repeating that same scenario time and again because I could not clear the first hurdle of having my incision heal. So frustrating! I think I can finally head for the next hurdle now!

WEEKS 11 & 12: The Effects of Chemo - or - "How to Lose 10 Pounds in One Week"

Like I had been told, the first day or two after my first Chemo treatment, I felt okay. By Sunday, the "bone pain" that Laurie told me about kicked in. That was kind of miserable. I particularly felt it in my hips, my spine, and my jaw, but my legs bones were feeling it too. Then Monday the "queasies" got going. They sent me home with various nausea medications. I took some, but not a lot, cause it was more like a stomach ache. So I took a lot of Pepto Bismol, which I found wasn't very effective. For me, one of the worst side effects of the Chemo was the "metal mouth". That made everything taste bad, including water. It was so hard to eat or drink. It's not like it ruined my appetite, because I was still feeling hungry (starved, in fact). But everything tasted so bad, it almost made me feel nauseas to eat. I had a couple of days where I sat on the couch and ate nothing but soda crackers. Of course diarrhea had kicked in, and that made things worse. Between that and water tasting so bad, I know I let myself get pretty dehydrated. So in the span of about a week, I managed to lose 10 pounds. Very effective, but not a diet I would recommend!

The next weekend Collin was graduating with his Computer Engineering degree from BYU. Even though I was still feeling rather "puny" I really wanted to go to that. I was past due anyway to get some extra saline in my expander, so I made an appointment at the Huntsman to have that done on the way down. I had been having problems with an "open wound" on my incision scar that I knew should be looked at also. On April 22, we drove to Salt Lake, and stopped at the Huntsman for my appointment. When my nurse Vickie looked at my little gaping hole, she told me she couldn't add to the expander with that, for fear it would just tear it open more. So she gave me a prescription for Silver Sulfadiazine cream, and told me to put that on twice a day, rinsing out the old cream with water each time, and covering it with gauze. I'd already been babysitting that stupid wound for two weeks trying to get it to heal with no luck. Now I had even more babysitting to do! I was so sick of the stupid thing. I was getting to the point where I wished they would just sew it up, and be done with it. But I knew that's not practical, cause they would just close the bacteria up in there, and risk causing infection. I guess I wouldn't want that!

The next day, April 23, Collin became an official college graduate. It makes me so proud to have my 4 oldest kids all be college graduates. Just "my baby" Chase is left to go. He is currently working toward a Graphic Design degree at BYU. Collin is also a lucky enough guy that he already found a job - at L3 Communications in Salt Lake! I'm happy that they're staying close enough that we'll get to see them and that baby boy Landon a lot. The rest of my kids are starting to shift to farther away places. Conrad & Jamie will be leaving Rexburg, Idaho this fall, so Conard can start Medical School in Glendale, Arizona. Tasha & Jake will be leaving Logan, Utah, probably for Amarillo Texas where she'll go to Radiation Therapy school. So - with Clint , Ashlie & the 4 boys in Tucson, that puts most of the kids and grandkids far out of arms length. Makes me sad!

Back to happiness - here I am with my new graduate son, Collin, & his little Landon.

WEEK 10: Porta-Catheters & Chemo Treatments

The week after my chemo consult in Rexburg, I came back down for the "real deal." I had to come down for two days on this trip. First was a consult with a surgeon, Dr. Hansen, on April 14. He would be doing a small surgery where he puts a porta-catheter into my chest, and puts a long tube down into a fast moving vein. That way the chemo gets flushed away pretty quickly, and doesn't fry your veins. They are then able to use this same spot in the chest to put the IV needles in for every treatment, and don't have to hunt for a new vein each time. That is a huge blessing for a person like me who has crummy veins. The thought of getting stabbed 5 times looking for veins at each treatment - I'd probably choose to crawl in a hole and hide instead.

I did all of my pre-check that same day, since I needed to be there at 6:00 a.m. the following morning. My in-laws, Richard & Nora Lee brought me to Rexburg and dropped me off at the hospital. Since Jamie was taking Reese to a doctor's appointment when I was done, my sweet sister-in-law Brenda came and picked me up at the hospital and took me to her house where I got to visit with her and my big bro, Stan, as well as their youngest daughter, Ashley, for a while. It's always fun to visit with family. When Conrad and Jamie got back home, Brenda took me to their place, where I spent the night again. Rich got there late that evening so he could run me to the hospital early in the morning.

The next morning was creepy to me -finding myself being wheeled into surgery again, not much more than a month since the last surgery. Fortunately, everything went fine. Dr. Hansen made an incision less than 2 inches long, and put in the port and catheter tube. He also went ahead and put the needle line into it so it would be ready for my first Chemo treatment. Like a dummy, I figured the port surgery site would be kind of sore for a few days, and then no more. Not so! The stinking thing is still tender and sore, now 2 months later!

This second pic is from just a week after the surgery, to show all of the fun bruising (You can also kind of see the lump where the port is.). That afternoon I went to my first Chemo treatment, which officially puts me where I started this blog clear back in April. After the treatment was done, Rich and I hit the road and headed home. Most people had told me it takes a day or two for the effects the kick in, so I just wanted to be home, near my own bed before I started to feel crummy. Now instead of being sore on just my right side, my left side also hurts to sleep on cause it scrunches on the port and makes it hurt. I can't win! How is a person suppose to sleep?!

WEEK 9: Kylie, The "Fun Room," and Wig Shopping

On April 6 I went down to Teton Oncology in Rexburg, Idaho for my consult with Dr. Dickson. My son Conrad knew of Dr. Dickson and his clinic because he worked with Dr. Dickson's brother at the clinic a year or so ago in a medical research type job. Conrad came to the consult with me since Rich couldn't be there. It was so nice to have Conrad come. As we were heading out, "almost" 4-year-old Kylie insisted that she come as well. We told her it might be boring, but she was still game, so we took her with us.

Dr. Dickson visited us for about an hour, and used a computer program to explain odds and percentages of tumors returning after surgery, chemo etc. With my information plugged in, the mastectomy dropped me to only 30% chance of a tumor returning with no other treatments. Having chemo drops that to 10%. Both me and Conrad knew enough about percentages to know that there's a big difference between 30% and 10%. So no big surprise, Chemo will be part of the plan. Kylie sat so quiet and cute on Conrad's lap. Dr. Dickson asked her a few questions so she could tell a few stories. Then they went and showed us the chemo room. It looks like a big family room with beautiful hardwood floors, a rock fireplace, and recliner chairs all around the perimeter. Near the entrance of the room, there's a nurses station where they had a bucket of suckers, from which Kylie happily took a sucker.

When we went back home Jamie asked Kylie how she liked the doctor's visit. Kylie said, "The talking part was kind of boring, but I really liked the 'Fun Room!'" It just made me smile. From now on, when I go for chemo, it won't be the chemo room, it will be the "Fun Room!" Kylie is so cute - she would look up at me with her big brown eyes, reach up, and say, "Grandma, pick me up and hold me." How could anyone on this earth resist that? So I'd pick her up and hold her, even though I was still being told to not pick up much weight. Kylie is such a petite little "lightweight," I figured it would be no problem. I did pay for it some that night and the next day with extra soreness. But to hold Kylie, it's worth it!

The next day Jamie took me shopping. Clothes have been and will be a problem for a while, because a I'm a little lop-sided up front. Jamie told me I needed to do the layering effect to hide that. We went to a clothing store Jamie knows of - which I thought looked too young and trendy for an old lady like me, and I really don't like shopping anyway. Jamie goes to a few racks, and in a matter of 5 minutes had picked out a stack of tops & told me what to mix with what. Most of the things she gave me to try worked so well! I now have a few new combos that use a camisole, top, and long sweater all together. Wow! Shopping with Jamie is the way to go!

Since I knew that I would be doing nasty chemo that makes the hair fall out, I figured there might be some times, mainly for church and more formal occasions that I might want to wear a wig. So off we went wig shopping! We stopped first at a shop in Rigby. Let's just say that the wigs there gave us more of a good laugh than anything else. Here are a few pics of some of the finer wig selections I tried on there. We next went to another store in Idaho Falls, and had much better luck. She really did have some nice wigs there, so I bought one. Wearing a wig will be very strange. I'll probably only choose to wear one on special occasions. Never imagined myself as a wig wearer! Here are four of my favorites:

WEEKS 7 & 8: Drain Tubes and The Nasty "R" Word

In hanging around and waiting for a major surgery to heal, the most memorable thing ends up being the "drain tubes"! Oh, did I ever learn to hate those yucky things! During surgery, they strategically placed 3 different tubes inside my chest area, with each of them coming out of small incisions under my armpit, with a single stitch in each to hold them in place. At the bottom of each tube was a clear, soft plastic bulb that looks like a hand grenade, which catches the blood and fluids (and some gross tissue) that need to drain out so it can't just build up and cause infection. Once or twice a day I had to empty the bulb into a little measuring cup, and write on a chart how much each bulb was draining. Okay - just a little gross! Because I was so sore and immobile those first few days that I was staying at the Smith home, my daughter-in-law, Jamie, ended up helping me drain and empty the tubes & bulbs. She is one tough cookie to be willing to do that! After a few days, Jamie was able to drive me to her home in Rexburg, where Rich came down to meet us and drive me the rest of the way home.

When we finally arrived home at about 10 pm, I could hardly wait to go crash in my bed. What a surprise awaited me in my bedroom! Scattered around the room were 6 vases of roses, as well as the mixed flowers from my Butte students refreshed with some new ones. My room smelled amazing! I knew my friend Murlene had to be one of the people involved, so I found out from her everyone who had pitched in on the flowers. Thank you: Murlene, Glenda, Nora Lee, Carolyn (again), Christine, Rene', Neldene and Becca! Good friends are so nice to have!

As I got to laze around, popping pain pills, breathing in the smell of roses (a little "Alice in Wonderland" theme going on there, eh?), I got one very unhappy kick in the head. Vickie, my breast health nurse at the Huntsman called to let me know my surgeon felt I should go get a consult with a Radiation Oncologist. WHAT?! From the very beginning the discussion had been about surgery and Chemotherapy. That's it! The stupid "R" thing hadn't been talked about at all as something I would even need to worry about. I was mentally and emotionally prepared from the get-go for surgery & chemo - not for radiation! So, I must admit - I have tried to be tough and deal with all of this stuff, but the "R" word really made me cry.

It will be such an imposition on my life, I really don't want to do it. Chemo involves 6 day trips to the clinic in Rexburg, each 3 weeks apart. Radiation is every single day, Mon-Fri for 6 weeks! Obviously there is no Radiation Therapy in Dillon, so that means being on the road every day, plus finding someone who can drive me if I don't feel up for it, or go move in with a family member who lives near a Radiation Center. Either way I have to impose on others - and here I thought I'd be done with this and have my life back by August! Very discouraging. Okay, I guess that's enough whining for now!

My happy news for this post is getting rid of the tubes. About 10 days after my surgery, 2 of the tubes were draining below the required 10 ml to get removed, so I went and got those taken out. I must admit, I was terrified to have them pulled out cause I'm still so sore and tender. Dr. Wilson took them out for me. One really stung as it was pulled out, the other was in such a numb place that I barely felt it.

This picture is celebrating the fact that I only have one tube left (Isn't it cute the way I have to pin it to my pants?). By the end of the week, the third one wasn't draining much, and I was able to have Dr Weed pull it out. Again I was terrified, but this one was from a very numb spot so I didn't feel it at all. What a relief! Even though it will take a lot of getting used to - having my right breast always be numb - at times like that I'm a little glad for it! (I know, I'm a wimp!)

Week 6: From Basketball to Basketcase

The day after all of my consults at the Huntsman, we took off for Las Vegas to watch the Mountain West Basketball tournament for the third year in a row. We didn't know if the cancer diagnosis would ruin it for us this year, but the timing worked out to squeeze it between the consults and next week's surgery. We're big BYU fans, and they've had pretty good teams the last few years so they're fun to watch.

Making this year's trip even funner, Tasha and Jake and the 2 kids came along so Tasha could check out the Radiation Therapy school in Vegas. It was fun having them around. Tasha is one of my best friends in the world. I love my 4 boys to pieces, but boy, am I ever glad I got my one girl!

After the basketball tourney, we drove back to Salt Lake where I checked into the Huntsman Cancer Hospital very early Monday morning. The place was a total zoo! They couldn't even give me a normal pre-op room to get dressed and get my IV's etc. They put a few of us in little curtained off sections of the big chemo room by the nurses station. That's where I changed into my hospital gown and did all the check in. Then the nurse finally came in and tried to put an IV into me. I have always been a really "tough stick"-- they just can't find good veins, so they poke me multiple times. This time the nurse gave up and said she'd go to plan B: just get a little IV in my hand and get enough drug in me to knock me out and let the anesthe- siologist put in an IV. Well, he did, and in my foot of all places!

My surgery got pushed back so late I didn't go in til 3pm, and it took almost 4 hours, and I wasn't back in my room til 8:30 pm. Lucky Rich got to sit around the hospital all day long! I've included pictures of some of the bruises from IV attempts in my arm, and my swollen up foot with the IV, and worse yet, me looking like a corpse in my hospital bed. My dear oldest brother Tim and his sweet wife Kay came to visit me that evening, and Tim took this picture. He was asking if I was sure I wanted a picture taken like that, and I thought, "What the heck - you don't get many chances to look like death!"

ONE OF MY LONGEST NIGHTS EVER
I have discovered that Morphine is as effective on me as a sugar pill. I have learned that as a patient you really need to be a squeaky wheel and let the nurses know you are in terrible pain - and boy, I was! I lay flat on my back trying not to move a muscle. If I so much as moved my right index finger, I thought I was going to drop through the floor. Breathing, and moving my chest up and down was so painful I had to concentrate all night at only taking shallow breaths. I would lay there with my eyes closed, hoping I could fall asleep and sleep away this horrible night. There was this red digital clock hanging on the wall in front of me, and occasionally I would peek my eyes open at the clock and see that only 5 or 10 minutes had gone by. I just wanted to cry.

The nurses would come in every few hours to inject more morphine into my foot - but no relief! Rich spent that night sleeping on the couch there in my room, but had to get up at 4:00 am and drive back home to Montana cause he is working on a job in Bozeman that is on crunch time. By morning I had a migraine headache and was really miserable. When the doctors came by for rounds, Dr. Agarwal said they had something more potent than Morphine, and without a beat I said, "Bring it on!" Dr. Nuemayer said they would look the other way and let me take two of my Excedrin for my headache. I took some Excedrin, and they put me on Dilaudid - the mega-narcotic - into my IV and then started giving me Loritabs orally between the injections.

Oh my goodness - what a big difference good dope makes! Dr. Agarwal explained to me why the pain was so intense. He told me this surgery is pretty brutal because they cut the pectoral muscle, and essentially fillet it away from the rib bone, much like de-boning a chicken. He said my pec and ribs get pretty beat up. Then they insert the expander under the muscle, fill it with some saline, and sew the muscle back together. They use dissolving sutures on the under layers, and glue on top. Funny, I don't remember such vivid details explained initially. I probably would have "chickened out" on being the filleted chicken if I'd gotten so much detail at the consult!

I eventually got up and went to the bathroom, which I couldn't imagine myself doing for at least week a few hours before. I tried to get up and go for a walk a little later, but got faint and almost passed out, so the walk had to be put on hold for a few hours. Then they brought me some applesauce and graham crackers since I hadn't eaten for almost 2 days, which gave me bit of a boost. Eventually, I got up and took a walk, and then actually went and took a shower. The shower just had a bench to sit on, and a hand-held spray. So I showered off, washed my hair, and now look at me: I'M ALIVE!

Good thing I started to look alive, cause I started to get lots of visitors, and it was fun to see them. Tim came by again and sat and visited for quite a while. My other brother, James, came by, then both sisters, Cynth & Barb, my sister-in-law and niece, LeAnn & Vanessa, then Aunt Fern & her daughter, Juli. To end the night, Collin, Tiffany, baby Landon and Chase stopped in. It was nice to have visitors when I was feeling a bit better.

I spent one more night in the hospital and got to leave the next day. The doctors wanted me to stay around the Salt Lake area for several days before going home. I have a number of family members who live down there, but since my daughter-in-law, Jamie, was going to be taking me home, we decided I would stay with her wonderful family, Rick & Cathy Smith. It was a crazy time for them, as they were planning a big 50th birthday party for Cathy, but they were still gracious enough to let me stay with them as a partial invalid. Chase came and picked me up from the hospital and took me to the Smith's beautiful temporary home (while they do some work on the new one they just bought). I did end up going to Cathy's big birthday bash for a while, and my sister Cynth and her husband Ray came and crashed it so they could visit me awhile. Thank you so much, Smith Family, for putting me up for a few nights! I'm truly grateful for your kindness.