Today is the first day of treatment since my Medicare kicked in. I wasn’t sure how it would work out, so I checked in early with high hopes to manage expectations. They assured me, it’s all taken care of. They assured me. there’s no charge for today’s visits. Whew! I’m still keeping my fingers crossed.
I also saw my oncologist this morning. I had a nice chat with the nurse about our recent motorcycle trip up north, and we talked about my mother-in-law’s passing. I also learned that my doctor recently had covid, so we aren’t the only ones. It’s going around, even amongst those who have been vaccinated. He apparently caught it at a conference. We laughed about how he holed up in a hotel to quarantine from his family. Since he couldn’t go out for food, his wife would bring him meals and leave it on the floor outside the door “like I had leprosy.” The quarantine is worse than the virus, in some cases. My caregivers have been with me for more than five years now. We have developed a good rapport, so it’s always pleasant when I go and see them.
My doc said he has to reload both of my infusions during this treatment, because it’s been more than six weeks since my last treatment (thanks Covid 🙄). Yesterday was exactly six weeks. If I had come in on Tuesday, we could have just reloaded the one. Herceptin has to be reloaded after four weeks, and Perjeta after six weeks. We try not to do that, but times like these it’s hard to avoid.
It’s going to be a long wait. I have 90 minutes of Herceptin and 60 minutes of Perjeta. Usually it is 30 and 30. I’m going to hit The Woodlands during rush hour. Oy vey…
My computer is full of juice, I have my Diet Coke by my side, and a warm blanket is on my legs. I’m ready to go!
I forgot to put on my port cream, but Warren is a good nurse. I didn’t feel a thing. He got good blood return and no problems with the port. Thumbs up…👍.
While sitting here, I received a text from a friend, whose friend was just diagnosed with breast cancer. They found it on her first mammogram. Fortunately they caught it early, and she can have a lumpectomy. It doesn’t matter the stage, it’s still hard to hear.
I am always empathic toward those who are newly diagnosed. The emotions are overwhelming. If ever you have heard a doctor say the “c” word, you know what I’m talking about. I pray for these women, as it’s a tough road. It’s a change in identity. We are part of a club we never wanted to join. Fortunately, there are lots of treatment options and we are living longer than we ever have in the past. God has blessed some amazing people with great knowledge and skills to treat and even cure the worse of cancers.
À la prochaine…hasta la próxima vez…until next time!
I’ve never seen a bear climb a pole before. Have you? Before you get worried that we were in danger, we were watching this unfold from the viewing deck at the North American Bear Center in Ely Minnesota, one of the intentional stops we made along our motorcycle path. Somewhere in the middle of Superior National Forest is a home to some rescued black bears, and some wild ones as well. We saw a squirrel do this just a few minutes earlier, but much faster 😂😂. It’s worth the 23 seconds to watch…
I learned a lot about black bears. For example, they don’t attack humans. They might chuff and stomp and throatily moan, but they do not growl (wolf sound effects are dubbed in for the movies). And they even have a white coat in some parts, unrelated to the polar bear and, no, they are not albinos. Lots of things to read in this place. The bear in the video is Holly. She is the matriarch of the bears at the Center.
Riding to the HOG rally, Duluth MI, our last day.
For the past decade we have looked forward to a big ride every summer. Some years we have gone on more than one trip. At the end of the ride we immediately began planning our next one. Last year we rode two bikes to Colorado, Lake Michigan, and Tennessee on three separate trips.
In December we sold the bikes.
We didn’t experience any remorse when we sold the bikes. We had ridden in all 48 states on two wheels. We’ve experienced rain, heat, hail, perfect days and not-so-perfect days, break-downs and bumps in the road that nearly fling you off your seat. We’ve seen a lot of sites. After our Tennessee trip, we didn’t immediately start planning another trip like we had in the past. 🤷♀️🤷♀️
After two days of riding home in the cold rain (insert claps of thunder sounds), perhaps we were burned out. Or maybe we just felt like we had accomplished our goal. Our bucket list was complete. In all reality, we aren’t really sure why, but we decided to do something different.
We plan to travel more using our Airstream. And, we will rent a Harley in far away places, where we can’t ride to (or don’t want to take the extra days to ride to). We will likely buy one someday in the near future.
Some people might wonder what this has to do with metastatic breast cancer. After all, that’s the purpose of my blog. It’s about livingwith metastatic breast cancer. We decided a long time ago we would not let life pass us by. We will continue to live life to the fullest as long as I have breath and energy to do so. We are taking John 10:10 literally, embracing the abundant life Jesus has given us.
The Ride. When they announced the national HOG touring rally was going around Lake Superior, we signed up as soon as registration opened. It’s a follow-up to the Lake Michigan tour we went on last year. It’s fun meeting up with other HOG enthusiasts as well as some executives who keep Harley-Davidson in check. We mapped out our route, and found the nearest dealership to rent a bike. We joined Eagle Rider to save on the rental cost.
Coop, meet our ride for the week! I promise she isn’t snubbing you, she’s just sad she can’t go along for the ride. 🤪😂
We rented the gunmetal gray Road Glide Limited pictured above from Harley-Davidson of Madison (Wisconsin). That’s a wonderful dealership. They stored our car for us as well. They are super nice and helpful people there. Alissa helped us with the rental, and another worker also helped connect Tim’s phone to bluetooth.
A sales guy tried real hard to sell Tim the CVO when we came back through. Tempting!! 😁
Because we were renting, we could not take the bike into Canada. That was a bummer, as it was part of the reason we chose this rally. I suppose we could have just tried it, but Eagle Rider wouldn’t cover any costs if there was an accident. Better not to risk it. We met the rally in Marquette Michigan, then went on an adventure of our own. They headed east to circle the lake counter-clockwise. We headed west and planned to meet them in Duluth.
The weather was beautiful from Madison to Marquette. The next day we rode west. Saw another Wisconsin sign, through Duluth, and on to International Falls through the national forest. Got rained on that day, but we did make it all the way to Duluth without getting wet.
Sad News. On the way to International Falls we got a call from Tim’s brother and sister. We were on a back road and had to find a place to pull over. His mom fell asleep with a cigarette in her mouth, while hooked up to her oxygen. She burned her face and tongue pretty badly. We stayed on course as they said Hospice was taking care of her. (She was already on home Hospice and was not given long to live.) We had planned to stop by on the way back through, and they thought she would be okay in a few days.
The next day we were on our way to Grand Portage Minnesota (by the Canadian border) when we got the call that his mom had passed away. I think this was just about the time we stopped at the Bear Center. Apparently, Hospice transported her to a Hospice House where they planned to care for her a few days. They gave her some morphine, and less than an hour later she was gone. It was July 27, 2022. She was 77 years old.
We have since learned the smoke inhalation (combined with her COPD and heart problems) lead to her death. They ruled it an accident. It’s a sad and traumatic way to die. She may have lived a few weeks longer had she not had the accident, but we are comforted by the fact that she was ready to go. She has been ready for a while now.
We were also happy we got to see her and spend some time with her on the way up. We played Yahtzee, had lunch together (she ate a whole meal with dessert), and chatted on the front porch. She talked about meeting Bill in heaven soon. Our last memories of her were positive, and we felt encouraged. She was a wonderful mother-in-law, and I will miss her.
Of course, this news put a bit of a damper on our motorcycle trip. We decided to cancel the last leg and head to his mom’s house from Duluth so Tim could meet with the family regarding arrangements. Canada is a long way up there! We had to return the motorcycle, so it wasn’t exactly a straight path. It would take us three days from the time we left Grand Portage.
We met with his siblings on Ruth Ann’s porch Sunday afternoon (yesterday), and went over the memorial and burial arrangements. It’s always interesting when family gets together 🙄.
Left to Right: Rick, Deidre, Deborah, Tim
Ruth Ann wanted to be cremated, which is probably a good thing given her condition at death. The coroner held her body to do their investigation, and finally released the death certificate this morning. On our way out of town, we met with the probate office, the funeral home, went by the cemetery, and stopped by the house to pick up some paperwork. We said our final good-byes (see you in a couple of weeks) to his siblings, then we headed home. We drove straight through.
Her memorial (celebration of life) will be in two weeks. Peachtree Village in Farmington Arkansas has graciously offered their facility, and they will provide food as well. Ruth Ann worked there for a while, and they loved her. Everyone did! Her memorial will be held on Sunday, August 14 2022 at 2:00 PM. After that we will move to Lincoln Cemetery for the internment of her ashes.
You never know how someone is going to die. I was told 6-9 months when I was diagnosed with metastatic breast cancer in 2016, and I’m still here. One of my breast friends was deemed cancer free and she died in an accident. Tim’s mom was told 6 months, then she died from an accident. Tim’s dad also died from unexpected, strange circumstances back in 2003. You never know. We just live this little mist called life to the fullest every day, trusting God for the outcome–whatever that may be.
What do you know about tomorrow? How can you be so sure about your life? It is nothing more than mist that appears for only a little while before it disappears.
James 4:14 (CEV)
Memories. It seems a bit odd to be posting a blog about fun and sadness all at the same time. But that’s the way life is sometimes. It’s filled with ups and downs. The line from Forrest Gump is so true…Life is like a box of chocolates. You never know what you’re going to get.
If you’re my FaceBook friend, you can see a bunch of photos from our motorcycle ride. It’s hard to pick just a few, as there are so many photos and videos to choose from. Here are some of my favorite moments from our trip.
Paris…Texas that is!
We’ve decided to start visiting all the Airstream Dealers. Most of them have no inventory right now.Finally got to go there. See Tim disappearing into the cornfields?!Loved laying on the soft, northern grass beneath the large shade trees.That was a beautiful day for a ride! Welcome to the Rally. Here’s your swag.No rain to Duluth, then it hit! 😫😭 We stayed in Ranier, which is a quaint port town with an award-winning hotel just outside of International Falls. Another beautiful day for a ride! We did get spit on a few times, but missed the deluge.Six miles from Canada! We took a walk and it was much longer than we anticipated!Windy! See the flags? Enjoy the ride!!We could have gotten a challenge coin here! Totally missed it. 😫This was a beautiful stop. Two lighthouses at one location!
À la prochaine…hasta la próxima vez…until next time!
This time it was Tim. He was away from me for several days, so we don’t think he caught it from me. I was no longer having symptoms.
We had our last day of worship at Parkgate Community Church on July 10th, and they gave us a nice reception to say thanks for the work we’ve done over the past nine and a half months. Tim was their Interim Pastor; I helped with worship and kiddos, as well as revising the bylaws. Their new pastor starts next week.
We packed up our Airstream on Monday July 11th and put her in storage. We’ve been living there half-weeks while Tim was Interim pastoring in Pasadena. Everything seemed to be going well until Tim started feeling a little under the weather later that night. He tested positive for Covid the following day. I tested negative.
No RV to quarantine to this time and I really didn’t want to go to a hotel. So we set up a barrier between us and steered clear of each other until he got better. He had congestion, cough, and fatigue for about a week. Then he had fever blisters that lasted another week. No kissing! 🤪😳😂😭
We were supposed to leave on our big trip Wednesday, so we had to make some last minute cancellations. Our original plan was to stop over and see his mom in Arkansas, then drive northeast to Villanova for our research residency, head west to Wisconsin and ride a rental bike in the Lake Superior Touring Rally, then head home. That all changed.
We postponed the visit with his mom and ended up doing our residency by Zoom (three days of listening to research projects). We weren’t the only ones who were recovering from Covid, or feared being in person, or for whatever reason didn’t want to make the trip. They opened up the option to everyone, which was super kind of them. About half the cohort was on Zoom.
Tim was feeling much better by the time his quarantine had ended, just in time for us to make the second half of the trip. The bike rental was non-refundable, so we really didn’t want to cancel that one if at all possible. We drove the Mini Cooper (“Coop”) to Arkansas where we visited with his mom, then on up to Madison Wisconsin where we picked up the bike and rode to Marquette Michigan for the start of the rally. The next day we rode to Minnesota where we stayed overnight in International Falls and then on to Grand Portage. Back to Duluth to catch up with the rally. We cut the trip short when we heard about Tim’s mom passing. More on that in the next blog.
Not everyone who has cancer is as fortunate as me. My treatment is keeping the breast cancer at bay. While I still have problems with neuropathy, brain fog, and fatigue (to name a few), living with metastatic breast cancer doesn’t mean I have to sit on the couch and watch television all day. Although it is tempting at times! It is tempting to use cancer as my excuse for doing nothing. Sometimes I do rest, purposefully.
I recently joined a class “Active Living After Cancer,” as a boost to my motivation to stay active. It was really hard right after surgery, and during Covid, but now I’m ready to get back into it. I am reminded of Paul’s words in his second letter to the Corinthians; these are “light and momentary trials.” We are still living life to the fullest.
On our motorcycle trip we looked for famous landmarks, took long walks in the evenings, and ate the local cuisine. In the daytime I used my muscles to stay on the bike. (Check out my next blog for more pictures from our motorcycle trip.) We fought the rain and cold, looked for healthy food options (always followed up by an ice cream of some sort 🤪), and enjoyed hot showers after every day’s ride.
Traveling or not, we often find ourselves sitting in a Panera Bread while working on ideas for future books, professional efforts, writing children’s books, or whatever job Tim has going at the time. I’d say we are pretty active! Nope..we won’t let this darn pandemic get the best of us.
À la prochaine…hasta la próxima vez…until next time!
Two more days and I’ll be switching to Medicare from my safe and secure insurance policy that has brought me thus far. It’s a bit daunting learning all the Medicare language. And because I’m not 65 yet, my options are more limited. Apparently, once I turn 65 I will have more options and insurance will be cheaper. Apparently.
In case you are trying to dance 💃🏻 through this maze as well, maybe this will help you out. Here’s what I have learned so far as it pertains to me.
Medicare has three main parts. Part A covers in-patient, with a $1,550 deductible. Part B covers doctors, tests, and specialists with a monthly premium based on your income, a $233 deductible, then Medicare pays 80% of all costs. Part D covers drugs. (There is a Part C, but that’s basically a combination of A and B in what’s called an Advantage Plan. I’ve been told to steer clear of those, and my doctor isn’t sure they would be covered, so I ruled out Advantage.)
In order to avoid paying the $1,550 deductible for Part A, and the 20% coinsurance for Part B, you have to have a supplemental insurance plan. I wish the letters aligned with the stars, as it can get confusing. Basically, to cover Part A deductibles, you have to get Plan B or higher. To cover the Part B coinsurance, you have to get Plan A (or higher). In Texas, you can only get Plan A if you are under 65. There was some disagreement about this, but I’ve double and triple and quadruple checked. The Medicare.gov website even says State Farm provides Plan G, but in reality they don’t. My local State Farm said they don’t provide any supplements, but it’s probably because she didn’t want to quote $20,000 per year for Plan A. Yikes! 😳😳 No thanks.
I will have to pay Part A $1,550 deductible if ever I go into the hospital. We are praying that doesn’t happen. This last surgery was hopefully the last one for me. I don’t know if I could handle another, to be honest. This is part of the reason we opted to do it now rather than later. If ever I’m in an accident and have to go to the hospital, I may be reaching out to my friends in a GoFundMe account. 🤪😁
All insurance companies provide the exact same supplements. Plan A is Plan A regardless of who provides it. And the doctors take it no matter whose plan it is. Insurance companies can charge whatever they want, however. That may range anywhere from $300 to $1700 per month. So basically, whoever provides the insurance for the lowest premium wins. It is up to the consumer to do the research.
I set out calling multiple insurance companies, then I discovered the Medicare.gov website also lists insurance companies and how much they charge. TransAmerica had the least expensive premium at $336.18, so I sent off the application today, and they confirmed they received it. They are a solid company, with a good reputation, and met my insurance friend’s approval test as well.
Something else I learned. Once I pick an insurance company, I’m pretty much stuck with that company. So I am praying I chose wisely. The reason is because I am currently in what is considered a “one time only guaranteed issue.” I don’t have to pass any medical tests or underwriting questions since I’m new to Medicare. If ever I decided to switch, I would have to go through underwriting. Guess what, I won’t be switching!
Plan D will be through Cigna. After multiple calls to brokers and Medicare, they were the best option at $23.10 per month. You can input your medications into the Medicare.gov website and their formula shows you how much it will cost by different insurance companies. Again, Plan D is the same for all companies, but their cost isn’t necessarily the same. Cigna won. There is a hefty deductible for most companies (which I won’t meet by the end of the year), but it will save me some money over paying for my medications out of pocket.
I kinda chuckled when I chose Cigna, because that’s who currently provides my insurance. They have been really good to me, although they tried to send me out of the MD Anderson network to get my chemo. They won’t have any say in that because infusions fall under Part B, not Part D, since it’s given in the infusion center. I will likely be moving to a mail-order pharmacy for drugs as it is cheaper. Honestly, this seems like it would be easier anyway.
I’m still crossing my fingers and toes as we wait to see if all this pans out the way they say it should. We might have to pay over $500 premiums per month plus deductibles, but at least we won’t be paying $2,500 per month for Cobra any more, in addition to coinsurance. (We still have to pay for Cobra for Tim until the end of the year, but thankfully my part is removed.) I’ll keep you posted as I discover more about this whole Medicare dance that I am now a part of.
Some of my faithful followers (or follower as it may be; there may only be one of you 🤪😂), are wondering about the whole surgery and recovery I just went through. I’ve been updating on Facebook, but here it is in one place for those of you who don’t see my posts or are curious on the chronology of events.
Tuesday, June 7. Surgery #1. SURGICAL LAPAROSCOPY WITH PARTIAL COLECTOMY, REMOVAL OF TERMINAL ILEUM, AND ILEOCOLOSTOMY. That’s a long way of saying I had surgery due to a large polyp in my colon. It was not cancerous, thank God! But I was glad we did it. I was in a lot of pain, even to the point of massive belly spasms if I was touched with the slightest feather.
Wednesday, June 8. Surgery #2 (Emergency Surgery). I had a sudden drop in hemoglobin and hypotension overnight. My blood pressure was 70/40 at one point. They started giving me bags of blood. I have O-negative blood, which primarily requires O-negative even though I’m a universal donor. In an emergency I can receive O-positive, which they did at least once due to a blood shortage. Dr. You wrote an exception that said, “Patient O Rh Neg transfused with O Rh Pos blood due to temporary unavailability of Rh compatible units.” People were asking if they could donate blood in my name, but she didn’t think that would matter. I could have sworn I saw an AB bag come through, but I must have dreamed that one. 😂🤪
They gave me about five bags total over night. It didn’t correct the problem, so I went in for a second, emergency surgery. Dr. You told Tim he might want to be here, so he came to the hospital and waited while I was in surgery. Nobody kept him informed as it was an emergency and they didn’t have him on a text string. Surgery was successful, and Dr. You said she was glad she had gone back in. They found a large hematoma with a hemorrhage, in the lining below my belly button. This is likely why I had all the belly pain.
She cauterized the bleed, made a bigger incision to remove the hematoma near the pelvis, and believed she had fixed the problem. I had two more bags after surgery for a total of seven. Plus a bag of plasma. Fortunately they were on top of it. Their quick response prevented what could have been a very serious or even fatal situation. This set my recovery time back a bit because of the back-to-back anesthesia, but we were back on course.
She’s not really sure why I had the hemorrhage. She said there are a lot of tiny blood vessels in that area. I have lots of scarring from my DIEP flap, so that could have contributed.
Thursday. June 9. They moved me to PACU, the step-down unit from ICU. The nurses are so attentive here. The room is small and uncomfortable for Tim as we can’t really talk very easily. I will be here for several days before going to a regular room. I have four incisions on my belly, with the largest being near my pelvis where they removed the hematoma. I’m so thankful there are no drain tubes! Just dissolvable stitches with steristrips.
Friday. June 10. I’m still on a liquid diet. Ice chips are my friend and I’ve been living on popsicles and jello. Honestly if I never see another jello again, I could live with that. I still have a catheter. I can barely move. Tim has come to visit me every day so far. It’s a long drive, and he has to navigate the whole parking system. It’s a pain, but he does it anyway. The nurses are so helpful, as well as the techs. They draw my blood regularly and bring me medicine for the pain. It’s tolerable, but I’m getting hungry for some real food.
Feeling a little down emotionally, due to some family related issues. There is a lot going on with our kids, Tim’s mom, his jobs, and of course … this. Being in the hospital makes it hard, because I can’t really do anything to help. I feel so helpless and Tim is taking on all the burdens. I’m looking forward to getting out.
A very cheerful Physical Therapist came to visit me late in the day. She was way too cheery for me today. I just want to eat 🙄. She had me doing some leg exercises and walked me all around the building. She’s trying to convince me to use a walker, which I did, reluctantly. I didn’t get tired as easily, but I really don’t like the walker. I feel like an old lady using it. It’s hard to listen to someone with a bubbly personality when you just want to crawl in bed and get under the covers. I told my doctor about that when he came by later and he chuckled.
Saturday, June 11. Day five in the hospital. We got up early, changed my gown, and moved me to the chair. Wow. We take so much for granted, like a simple move from the bed to the chair. It’s much harder than it looks. I had some trouble getting deep breaths due to the belly pain and it’s restricting. I’m doing my breathing exercises, and I ordered breakfast. Hot tea and a popsicle. Still on a clear liquid diet and waiting for the . My face is super puffy from all the weight gain. I’m hoping it comes off!
Tim came to the room and we worked on our research project for about an hour. There was a fire drill that lasted for at least ten or fifteen minutes, and had us wondering whether we would need to leave the building. Crazy…
Did my breathing treatment, meds, took another walk, then they finally moved me to a regular room. At least the window is bigger and I can see more than a parking garage. I see the blue sky and a rooftop of another MD Anderson building that has some type of garden up there. Intriguing. I’m walking better but still very tender in the belly. I’ll be watching church online tomorrow.
I am having difficulty breathing, so they did a chest x-ray. The tech came to my room and did it right there in my bed. It was done in 2 minutes. Amazing technology. Result: “The bilateral basilar atelectasis or pneumonia and small pleural effusions.” I saw the picture when he took it, and I thought it looked like half of my lung was missing. Basically I was full of fluid. My lungs were concerning, so I’m trying to do the breathing exercises more regularly. They want me to do ten per hour, but I sleep a lot so I know I’m not doing nearly enough. So. Tired. Fluid. Everywhere. I was gaining weight and it wasn’t coming off. So hard to breathe. So hard to stay positive. So hard to stay motivated to do the breathing exercises. They want me up and moving, so I’m walking around the nurse’s station 5-6 times per day. It takes a LOT of effort, but I know the adage, “no pain, no gain.”
Sunday, June 12. Wish I could go to church, but online will have to suffice. They removed my catheter which was a huge help. (They did that right about the time Tim started preaching Shh don’t tell him ). Still having trouble breathing, and my belly is swollen with so much fluid. So they did a CT scan of my abdomen. That’s the worse one I’ve ever experienced. Drinking the contrast nearly made me sick, and I had trouble laying flat and breathing. I could not hold my breath for the whole ten count, but they said it was okay. They did find lots of inflammation, including my gall bladder. At this point they are thinking it will settle down as the fluid begins to pass.
Tim came to visit me after church. He came bearing gifts and cards from the church family. A beautiful prayer blanket was knitted by Mrs. Gonzalez, who prays over every stitch as she makes them. It’s beautiful and meaningful as well. I am reminded I am covered in prayer whenever it is near me.
By the end of the day, I was passing liquid poop. Tim gave me a high five at five. I’ve never been so happy to poop. Then they let me take a shower and wash my hair. Yes, I did it myself with just a little help from hubby. He does deserve much credit. He is such a trooper. I love him and appreciate him so much. It’s not easy getting in and out of the buildings here. Amazing how much more human you feel after a shower.
I was up walking six times today including the CT adventure. I’m still on a clear liquid diet until tomorrow at least. I’m hoping I get some soft food like mashed potatoes or oatmeal sometime tomorrow. That would make my day. I haven’t been extremely hungry because of the the inflammation, but mashed potatoes sound really good right now.
Monday, June 13. Day 7 in the hospital. I did not feel well today, so I wasn’t feeling like posting. I was disappointed when the doctor said the poop was only one step. I still needed to pass gas. Still on a clear liquid diet for another day. Just a general overall yucky feeling. Smells, alcohol prep, even lovely perfumes were upsetting. I think I just need some real food in my belly. It’s been more than one week since I’ve had any real food.
The nurses change shifts every 12 hours, at 7:00 AM and PM. They always look at my incisions and share a report with the next nurse at the shift change. Most of the nurses are pretty good, attentive and helpful, but one nurse has a very thick dialect and I can’t understand most of what she says. I’m sure it is frustrating for her, but just as much for me. I was glad when her shift was up. The nurses and techs come in a variety of ages, ethnicities, and levels of experience.
Everyone who comes in wants to look at my belly. I’m thinking of charging admission. 😂
Tim wasn’t able to visit me today because of multiple meetings and work commitments, so I was not only feeling yucky physically, but a little emotionally drained as well. I was “tucked in” by my night nurse, who is older than some of the others. I have her had for a few days now. She cradled my head in her hands, kissed me on the forehead, and said, “I love you.” She will never know how much that meant to me, to hear those words just before going to bed. Nurses do not get enough credit for all they do.
Tuesday, June 14. Today is much better! I woke up before the sun when the lady from vascular access came to work on my port. She was interesting, with a spiked hairdo and fun conversation. We had a nice chat about Hall & Oates, amongst other bands from my era which she has seen. She knew who Charle DeChant was, also known as “Mr. Casual,” which was impressive to me. He plays saxophone for Hall & Oates, and I got to know him when he played in our band in Orlando from time to time. Love to hear him play!
Anyway, she was here because they are having trouble getting blood return from my port. It flushes fine, meaning it can receive fluids, but it must go both ways or there is probably a clot preventing the return. The needle was scheduled for removal tomorrow anyway, so she removed the needle from my port and inserted a new one. Still no blood return. TPA (medicine) was inserted to break down any potential blood clots or fibrous something or other. Wait three hours and try again.
Used the bathroom (this is becoming a regular occurrence now) then went for a walk. Three laps this time. I am very slow but I keep my head up and so far no falls.
My doctor came in around 5:00 AM and said he was bumping up my diet…FINALLY!! He had to staff it with the team to write the order, so I waited and waited. I could envision eggs, oatmeal, toast, and maybe even a banana. It took three hours for the order to go through, but I finally got to order my real food. Starting slow. Just a few bites of each. Just a flavor change. Even though the eggs were cold, it was a nice change of pace. If I do well on this diet, I might get to go home tomorrow.
So the Hall & Oates lady went home for the day, and another vascular access specialist came up and tried again. Still no blood return. Second dose of TPA was inserted, then we waited another three hours. No blood draws or medicine in the port during TPA. My port has had a beating this week. I think it is starting to rebel. In the meantime, I got flowers delivered to my room from the Parkgate Church family, and I talked to some friends. That cheered me up.
But the BEST news of the day came when I learned that our #6 Jedi was born at 8:14 AM! His birthday is June 14, 2022, exactly 13 months to the day after his big sister Mikayla. Jaxson weighs 5 lbs 11 oz, is 17 3/4in and head is 13in. She was 36 weeks, 4 days. He’s a tiny thing! Mommy and baby are doing well, and I can’t wait to see them both. This was taken right after birth, at the beginning of the “golden hour.”
Wednesday, June 15.
I managed to do well on a full diet for a day, so they discharged me today. Funny, I only had two meals really. Breakfast and then spaghetti for a late lunch. I only ate a few bites as I still feel very, very full.
We are staying at the RV for about a week, as I have some follow-up appointments downtown and we didn’t want to go too far away from the hospital for a few days. Just the drive to the RV made me sick to my stomach. I threw up, but once that was over, I started feeling much better.
Our RV looks like a hospital, with a wedge on my bed, breathing treatments on my nightstand, and multiple bottles of pain killers on the bathroom sink. I’m only taking them as needed. Fortunately my pain is under control.
Watermelon tastes really good. I’m trying to keep my fluids up, but my belly still feels really full. I have yet to pass gas, but I still have several bouts of diarrhea per day. Slowly feeling better, day by day. I slept 12 hours after I got home, without any pokes or prods in between.
Thursday, June 16. Today was a full day. I started a class called “Active Living After Cancer.” I thought this would be a good time to do it since I need to start getting active again after my surgery. It’s a virtual class on Zoom, and they are sending a package with all kinds of goodies in it. They wanted us to “walk” for 2 minutes in class, but when they turned on the video it was more like Zumba. 🤪😳 I couldn’t even do 2 minutes. I have a goal to work up to.
Our son and daughter-in-law surprised us with a quick visit to introduce us to our newest grand baby, Jaxson Timothy West. They have been waiting to make the announcement because they wanted Tim to hear firsthand that they named the baby after him. What an honor and a blessing!
He was released early from the hospital because there was a gas leak outside the building. Fortunately, he had already passed his hearing test and car seat test. Apparently the moms were all gathering in the lobby because they could smell propane. They started discharging them all, including little Jaxson and Bree.
I am still providing supervision for a couple of LMFTs who are working toward licensure, so I had two sessions this afternoon. They were very accommodating and understanding of my surgery and recovery. I was pretty tired after that, but it felt good to do something productive and helpful. What a full day!
The church has decided to bring us meals for a few days. That was such a blessing! We had kids meals from Olive Garden tonight. I was a little concerned about the spaghetti after yesterday’s fiasco, but I mostly ate the noodles and only a little sauce. I ate one shrimp. Only about three or four bites and I was finished. No problems keeping it down. I’m sure the other day was due to transporting home, and of course Olive Garden has much better food anyway. The kids meals were the perfect size. Tim ate the rest of mine and we had grapes left over for a snack.
Friday, June 17. I farted!
Friday, June 17. The picture captioned above says it all. 😂😂😂 I finally started passing gas, and while there was no “plop, plop, fizz, fizz,” it was such a relief! My system is taking a while to figure out the new structure, but it’s finally getting it. Our church friends brought us caprese chicken with rice, fruit salad, bagged salad, and homemade focaccia bread. It was nice to have company and chat for a few minutes. This was the first time I ate more than just a few bites. Nearly a whole meal!
Saturday, June 18. Getting stronger every day. But it’s slow going. I feel like I’m about 5% better each day, on a scale of 100%. I still haven’t left the RV, so my walking consists of walking from the living room to the bedroom and back (about 20 steps). We’ll get there! Tim turned on the golf, which is always good for a nice nap. 😂
We had a wonderful meal of comfort food brought to us for dinner, including potato soup and club crackers. Again, nice to hang out with friends for a few minutes as well. Those crackers lasted me a few days, and they came in handy whenever I started feeling a little hungry or queasy on a long drive. They also brought a small carrot cake. Oh my! Let me say this was absolutely delicious, although I still can’t handle a lot of sweets.
Sunday, June 19. Father’s Day! Typically we would have a day out, and enjoy some time together as a couple, maybe even with some kids. Today would not be a typical Father’s Day. I would stay in bed and watch church online while Tim was preaching. We did finally venture out of the RV together and went for a dinner at Panera Bread. We didn’t want to go anywhere that would take too much effort to walk in. I had mac and cheese, with plenty left over for dinner tomorrow. I thought I had bought him a card, but honestly I couldn’t find it anywhere. Oh well, there’s always next year. OR, we can celebrate the Australian Father’s Day in September. 🥰😁
First dinner out after surgery. Happy Father’s Day sweetheart!
Well, that’s the update from surgery to my first meal out. The following week I continued to get stronger. We finally got to move back to our home in Conroe on Wednesday. I weighed myself on my home scale, and I’m down about ten pounds from what I was prior to surgery. I can see it in my face. I’ll take it!
Tim left on Thursday for Arkansas to visit his mom who has been ill, and then on to Kansas City to a friend’s wedding. I couldn’t go, but I’m okay. I had several doctor’s appointments which various people drove me to until I could drive myself, in addition to treatment. I had my follow-up with my surgeon (Dr. You) on Friday June 24th, and she discharged me from surgery! Yay! I’m officially free, just continuing with recovery. No restrictions, except I can’t lift for another 4 weeks. She said by July 4th I should be feeling pretty normal.
I drove myself for the first time, to run some errands yesterday (Saturday), and the steristrips finally fell off later today as well. The incisions look really good. I think they should be fairly invisible within a few months.
That brings us to today, and the end of this very lengthy blog. Tim drove all the way home from Kansas City last night. He stopped a couple of times to sleep, so we will probably go to bed early. We watched church online and we are going to go see an Elvis movie this afternoon.
I know I’ve said it a bunch of times, but I am so thankful for all the prayers, cards, texts, calls, messages, and gifts from my friends and family. I have a great prayer support network, who prayed for me even when I didn’t have the strength to pray for myself. I am looking forward to continuing to grow stronger, to the point that at the end of July we have a bike trip planned. More on that later!
Preparing for colon surgery is similar to a colonoscopy prep, with a few things added in for good measure. We came to Houston to be closer to the hospital, where we will stay in the RV until after I get out of surgery and have some time to heal. I woke up early when Tim was getting ready for work, and so it begins.
Yesterday I went to MD Anderson downtown after church to do my asymptomatic Covid test and bloodwork. Sunday at the cancer center looks verydifferent from any weekday I’ve been there. There was no line at the valet. The lobbies were empty. Very few people passed me on the mile-long walk between buildings. I was in and out in no time. It took me longer to walk through the skybridge than the actual visits. Tim barely made it to Panera Bread when he had to turn around and pick me up.
The phlebotomists took an extra vial to confirm my blood type, just in case I need a blood transfusion. My blood type is O-negative in case anyone is wondering. Everything came back normal, and negative for Covid, so we have a green light to go.
I’m also thrilled to see my Glucose Level is still in the normal range. I attribute this to the Holy Organic Basil and Black Cumin Oil. Look it up. There’s a lot of research on it. I’m a believer!
Today I’m on a clear liquid diet accompanied by the not-so-yummy Miralax/Gatorade solution which starts at noon. Tonight I’ll take a shower with the special cleanser before bed, and repeat in the morning. I’ll need to do laundry sometime today, because I have to sleep on clean sheets with clean clothes. This all helps decrease the risk of infection. I also have to take my antibiotics later tonight.
It’s a lot to remember. I hope I don’t forget something important!
Tomorrow is an early morning arrival time from what my surgeon told me. However, they will call later to confirm.
For some reason my blog is giving me fits this morning, so I’m going to close. I’m already hungry. I think it will be a long day, but I will use this time to focus on the goodness of God as well as all the people who are supporting me daily in prayer. I’m sure the day will be over before we know it. I’m looking forward to a nice nap tomorrow!
I’m currently on the second bag. I’ve finished Perjeta, and now I’m getting Herceptin. I have a new nurse today, and he is on top of it. We’re moving through treatment pretty quickly. Tim is in the building working, and I feel like I need a nap. 😂😂
My treatment was scheduled through lunch today, so I bought a “Think” high protein bar from the café to sustain me. I am a thinker, so it’s appropriate. It’s called “lemon delight,” but the bar looks nothing like the lemon bar pictured on the package. And, it doesn’t really taste like it either. The Atkins bars are more true to taste. I hate falling for false advertising! 😫 I bought it because it has zero (0) sugar.
Speaking of sugar. They draw blood every time I come, so I get to watch it on a regular basis. Today, my glucose was in the normal range! I wasn’t fasting and it’s still normal. It’s the first time in a very long time. I’ve been 100-110 in the “at-risk” range for a while, which is just above normal, but it has been slowly creeping up. I was concerned it might turn to diabetes some day, since it’s so common in my family. This was a nice surprise. Maybe those new supplements are working. 😁
I hear my BD AlarisTM Pump is beeping, so I should be going home soon. Have a wonderful day everyone! And remember, you are only as sweet as you THINK you are!
Dr. Kovitz, my medical oncologist, called me today. Apparently he spoke with my surgeon and they decided I can go ahead with my infusion on Thursday. The surgeon was following her regular protocol which is to stop all chemotherapy infusions before surgery. But Dr. Kovitz reminded her this is not chemotherapy (even though we call it chemo and it’s infused in the chemo infusion center). It’s immunotherapy. Dr. Kovitz said we really don’t know how long we would have to wait for it to get out of my system anyway. So…we are back on schedule for treatment this week.
Oh, did I forget to tell you I’m scheduled for surgery? 🙄
It’s been a busy week. We helped move our daughter’s family out of their apartment into a storage unit until their next place is ready. They can move in tomorrow. She has been staying with us (and her two kids) in the meantime. The kids are feeling the transition. They are five and three, and they are good at it. 😂 Did I say they can move in tomorrow? 😂🤪😂 She also starts a new job tomorrow. But that’s a whole other story for a different blog.
Surgery, oh yeah.
My colorectal surgeon, Dr. You (not to be mistaken for Dr. Who), called me after the failed polyp procedure. She said we have two options. Since the biopsies did not show cancer (they are precancerous adenomas which may or may not turn into cancer), we can “wait and see.” In other words, go in every year or so and take more biopsies to see if progresses to something more. If it does, we will do surgery then.
OR …
If I “can’t sleep at night” because I’m concerned about it, or I just want to be certain, we can go ahead and do the surgery. Remove part of my colon, appendix, and of course the polyp.
I weighed the options. Hmmm. I don’t like the idea of waiting and watching something grow. We did that with my breast cancer the first time, and look where it got me.
And then Dr. You gave me the blueberry pancake analogy, a/k/a her “caveat.” That sealed the deal for me. After talking with hubby and friends, we all agreed.
What is the blueberry pancake analogy? I’m glad you asked.
Basically, when they do biopsies it’s like pulling pieces from a blueberry pancake. If they find blueberries, we know they exist. However, there is no guarantee there are no blueberries just because they didn’t find any in the biopsy. Her caveat is that. Unless we remove the whole pancake, we don’t know if we missed any blueberries. But don’t worry, she added. There are several stages before it hits the cancer stage. 😳😳
I like blueberries, but not when they are compared to cancerous growths. I didn’t like the idea of the slightest possibility that something could still be lurking underneath this giant thing. The only way to know for sure is to remove the whole pancake, er, I mean, polyp.
Besides, my insurance is changing to Medicare in July and we still don’t know what all that means. All my out of pocket expenses are currently met for the year with my current insurance, so we can let Cigna pay for it.
All that to say…we decided to go ahead and do the surgery. It’s scheduled for Tuesday June 7th at the downtown MD Anderson Cancer Center. I have pre-op in The Woodlands on Friday May 27th, a Covid test and labs on Sunday June 5th, bowel prep (of course), and then I’ll be in the hospital from June 7th until after surgery for 3-5 days (depending on how quickly I poop💩). It looks like recovery is about 6 weeks but she said I should be feeling pretty good after 2-4 weeks.
I will be speaking about my journey on Sunday, May 15th, in both morning services. It’s not about breast cancer (although I will share some pictures and stories of my journey). It’s not even about surviving or thriving (although those are good things as well). It’s about living life on purpose.
We will take a look at some heroes in the Bible, how their faith journey stayed strong in the midst of life’s suffering (and even death). We will also look at the sovereignty of God. One of the hardest parts about praying for healing is praying for God’s purpose. We want what we want, but it may not always be aligned with what He sees through his omniscient lenses.
Faith is trusting God regardless of the outcome.
If you want to come and hear me speak, I would love to see you in person at Parkgate Community Church, 3715 Preston Road, Pasadena Texas. Or you can catch the message online live at 9:00 or 10:45. (https://www.parkgate.church). The recording will be there for you to watch later as well.
Please comment below and tell me the “word” that stuck with you.
Oh yeah. I’ll be playing that beautiful Steinway as well. 😁
I don’t talk about our finances very often; that seems to make people uncomfortable. If that describes you, please stop reading and move on to the next blog. Don’t worry, I’m not asking for money. Just reporting on our situation.
I went on disability so I wouldn’t be so stressed trying to work full-time while doing all the treatment, scans, doctor’s visits, etc. I’m pretty sure I blogged about this decision already; if you want to know more, you can go back and look for the whole disability conversation. Or, let me know and I will fill in the details.
Anyway. Here’s how it works. You have to be on disability five months before SSDI will kick in. After that, you must wait another 24 months before you can get on Medicare. I was fortunate enough to have a good job, so my health insurance (COBRA) has been hanging on in the interim. Tim has always been on my insurance, as he has been unable to get group coverage on any of his jobs.
Since leaving my employment, COBRA has gotten quite expensive to the tune of $2,500 per month (yes, you read that right), especially after they extended us past the original COBRA period. It’s a lot better than paying more than $30K per treatment. Yikes! Needless to say, we were looking forward to getting on Medicare. (Now we just have to find insurance for Tim.)
Finally, after waiting 30 months, (Woo hoo??) I got my card in the mail a couple of weeks ago, it’s official. I will be on Medicare starting in July.
For some reason, we thought this would be the “answer” to our insurance dilemmas. It’s all very confusing, however. I have not taken any action as I have been waiting for more information. Then we saw an ad for a Medicare specialist in the Impact, a freebie magazine with updates about our local area. He’s been doing this for a long time, so we scheduled a meeting.
The first thing he helped us understand is that Medicare does cost money. First of all, you have premiums to pay (based on your income). He also said that people typically purchase a supp[lement because even with the government plans there are many costs that are not covered. If you purchase “medigap” supplements, it helps fill in the gap.
Bad new. He said my options were limited until I reach 65. He said I could not get medigap supplements to cover all the additional costs. He seemed knowledgeable, and based on the information he shared, we got a bit discouraged. It looked like we were going to be out a LOT of money to pay for my healthcare costs.
I paused after starting this blog, and prayed. God, please help us discern your will. Help me understand all the ins and outs of Medicare, and help me find someone who can give me some good news.
The next thing I did was reach out to Medicare directly. It’s a government entity, so I was expecting long wait times with little support. As it turned out, my wait time was reasonable and the lady I spoke with spent nearly an hour helping me understand all our options. She didn’t seem to be in a hurry, and she provided me with some other numbers to call as well. As it turns out, we have lots more options than the other guy shared. Yes, I do qualify for Medigap insurance, and there is a number I can call to help me figure out the best plan and insurance company for me.
Here’s the interesting part. Insurance companies are not required to provide Medicare supplements to persons under 65. But some of them choose to do so. Maybe the companies the other guy sells for don’t do it, so that’s why he thought I couldn’t get it. I don’t know. But the Medicare lady gave me a list of possible providers. We just have to make sure my doctors are on all the plans.
Here’s another interesting part. The supplement you choose (for example, Medigap Part G) is the exact same coverage with each insurance company. You might pay $300 with one and over $1,000 with another. But you don’t get anything different from the more expensive company. No wonder people get discouraged! Apparently insurance companies are not limited to charging the same amount as the next guy.
So, it’s time to go shopping.
I’m still trying to matriculate through this Medicare maze, understand what they cover and what they don’t, and how to keep from going bankrupt in the process. I will spend more time on it next week. Some things can’t happen until at least June, so there’s still time to make decisions. But at least now I feel a bit more hopeful than when I first started writing this blog. Thanks to the Lord for answering my prayer.
. My face is super puffy from all the weight gain. I’m hoping it comes off!
). Still having trouble breathing, and my belly is swollen with so much fluid. So they did a CT scan of my abdomen. That’s the worse one I’ve ever experienced. Drinking the contrast nearly made me sick, and I had trouble laying flat and breathing. I could not hold my breath for the whole ten count, but they said it was okay. They did find lots of inflammation, including my gall bladder. At this point they are thinking it will settle down as the fluid begins to pass. 
I’ve never been so happy to poop. 
Then they let me take a shower 
and wash my hair. Yes, I did it myself with just a little help from hubby. He does deserve much credit. He is such a trooper. I love him and appreciate him so much. It’s not easy getting in and out of the buildings here. Amazing how much more human you feel after a shower.
delivered to my room from the Parkgate Church family, and I talked to some friends. That cheered me up.
