One of our Florida friends has cancer. Not the same kind as me, but his has also metastasized. Many of you know him. We were planning a trip to Florida in December and wanted to spend a few weeks, but when a friend goes home on palliative care, you do what you can to encourage them. NOW.
Tim had some free rental days, so we rented a nice car and drove to Florida. We looked at my oncology schedule, and found about a week when we could go between treatments. We got home late last night.
We might not have recognized him had we run into him on the street. The long beard that matched ZZ Top has been replaced by a clean shaven face, thanks to several rounds of chemo and radiation to the neck and head. I believe this is the first time we have ever seen him without facial hair. His appetite has wained. He is thinner, by about 100 pounds. His voice sounds different. He walks a little slower, but he is not bedridden.
In spite of his many physical changes, we can see he’s still the same person. He loves to play games, and he even sat at the table for several hours while the boys fought battles during Axis and Allies. (I went to dinner with the ladies.) After the game, we all reminisced. We went to church together. Played in a band together. Traveled to other countries and did rock concerts. He was our tour guide because of his impeccable memory regarding historical facts. He told a joke (I was the brunt). We all laughed. It was a great night to see our friends and hopefully provide them with a bit of a distraction from every day concerns, anticipatory grief, doctors’ visits, major life-changing decisions, and so forth.
We’ve been there. We are there. We know what it’s like to be told bad news. I am so fortunate the Lord lead me to MD Anderson and a team of specialists who found treatment to keep my body alive years longer than they expected. Not everyone’s body responds to treatment the way mine has. Not all cancers respond the same way. Sometimes treatment options run out. Many times they do. I’m praying our friends find doctors who are willing to try something else to keep going.
While I was talking to his wife, I was reminded of a song I recently heard by Dolly Parton and four other women. It’s a hope for the future where “pink is just another color.” The fact is, the researchers are closer to a cure than they ever have been. That’s what I’m praying for! If you’d like to watch the music video, here’s the link. Have some tissues handy.
We saw lots of friends on this trip, in spite of the brevity. You know who good friends are when they drop what they are doing to see you while you are in town. I wish we could have seen more! Maybe next time sick friends will be feeling better and we’ll have more time to get around town to see the rest.
I just did bloodwork, and now I’m waiting for my chemo appointment. They will infuse Zometa for my bones today, in addition to the normal Herceptin and Perjeta protocol. My oncologist got the blessing from my bone specialist. We try to plan our trips in the three weeks between visits. Tim and I often sit in a café, sip hot tea or Diet Pepsi, eat lunch together, work on projects (mostly separate ones), and bounce ideas off of each other for our next trip to wherever.
It was a quick trip all the way to Florida and back, and I’m so glad we went. We have decided not to question ourselves when the Holy Spirit leads us in a particular direction. Marker on the dry-erase wall calendar has been erased and replaced multiple times. We have learned to be flexible. Cancer does that to you. The process of going through it teaches you so much about living life to the fullest, being flexible, and spending time with the ones you live.
Now, go give your loved ones a hug. ❤️❤️
À la prochaine…hasta la próxima vez…until next time!
I get that question a LOT. “When will you be done with treatment?” The typical response inside my head is some quip that goes something like, “when I die,” or “I’m in it for life.” But I know the questioner is sincere and typically doesn’t understand all the ins and outs of my disease. So, I smile and explain why I will never be done with treatment. The protocol is every three weeks for terminal breast cancer.
I may have to change that mantra… 🤩🤩
I saw my oncologist today, and he gave me some potentially good news. He checked with the breast team just before my appointment and asked when this “poor patient” can stop treatment, if ever. After all, in December it will be six years since my diagnosis of metastatic breast cancer, and ten years since my original diagnosis of breast cancer. And I’ve been stable since January 2019.
I was encouraged to hear, HE was asking the question. I thought he assumed, like me, that it was for life.
However, at this time the response remains the same. “We don’t know.” The data doesn’t support stopping treatment as of yet. And we likely won’t have any new data for a very long time. After all, who wants to be part of that study? Stop treatment to see if you are cured, but risk a progression that could be even worse than the time before? Nah, I’ll keep plugging away until they have the data that says otherwise, or until it no longer works (if ever).
BUT, it was encouraging to know my oncologist thinks there could come a day when I will no longer need to come in for treatment. 👍👍❤️❤️❤️ THAT, my friends, is HOPE.
A few other things were discussed in our time together, like when I’m due for my scans and such. I also learned that he is now a full professor. That’s the highest rank at MD Anderson. He is such a humble man. I had to hear that from a nurse, as he would never tell me that himself.
After some laughs and chats with the tech, nurse, and physician assistant, I went back up to the third floor for treatment.
They obliged my request to get in earlier than my 2:45 appointment since I had finished my bloodwork and met with the doctor before 10:00. I haven’t been in a room with a bed for a very long time, so that was also a nice surprise.
As soon as my port was accessed, I logged in to my Active Living After Cancer group. This was the last week in a 12-week virtual class. We all “graduated” today, and I will forever remember these ladies. I also found a filter in Zoom I didn’t know existed.👩🎓🤪🤪
We plan to get together for some events and lunches to stay connected. Maybe even a monthly “reunion,” to encourage our activity. The leaders have been so encouraging. I have started a personal friendship with one of them, as she is finishing her doctoral degree and we seem to have a lot in common. Her energy is over the moon!
Also while in treatment I was blessed with a text from our daughter-in-law, containing the cutest video of my two youngest grandkids. She caught Mikayla saying she wants to see “NANANANANANA!” She was yelling it over and over. 😂😂😂 And the baby has his rattle socks I gave them, on his hands, rattling them like crazy. I cracked up watching it. ❤️❤️❤️
Treatment was done by 12:15 and I was ready for lunch. I love my nurses! Even with our chats she worked fast and efficiently. I was happy to eat and get home by 1:00. As I am typing this blog, we are on the road again, heading out for another Airstream Adventure!
À la prochaine…hasta la próxima vez…until next time!
SOoo… I thought I had a cold. For a week now. No fever or chills, just a very mild sore throat, mild cough and runny nose. Symptoms are almost gone now, as I said I feel great. Well…Turns out I have (had) Covid. I wouldn’t have taken a test but my son was sick tonight and he tested positive at the doctors, so Tim and I both took a home test.
You know those kits that have been piling up which the government keeps sending us? Yeah, that’s the one.
Tim’s was negative and mine was positive. You can test positive for several days or even weeks after you get it.
I thought I was tired all last week because of surgery. I thought I couldn’t get motivated to get off the couch because of surgery. I thought I had a cold. I thought I wasn’t hungry because of surgery. I didn’t throw up this time (although I did get nauseated once, but I thought it was because of … you guessed it … surgery). I’ve been blaming a lot on surgery which was probably due to this stupid pandemic. Who knew? At least it wasn’t as bad as when we got it in December. I have heard this year is not as bad as last year from others who have gotten it again. There is a silver lining.
I might have given it to Bryan when we saw him yesterday. Or maybe he got it from his daughter. She tested positive a week or two before me. Who knows… According to the tool on the CDC website, I can go outside on June 30, which was yesterday. No travel until July 4th according to the CDC. The only travel I had planned was going back to the RV to go to church in Houston. Looks like I will miss another Sunday at church. 😫😭😫😭
We only have one more week at the church in Pasadena after this one. I hope nothing else goes wrong! I don’t want to miss our last week there.
Tim decided to go to the RV tonight to stay away from me until he’s sure he didn’t catch it. He left pretty quickly after we did the test. He’s supposed to preach Sunday. He took some of those test kits with him as well, just to be safe. We have spent more days apart in the past month than we have in many years of marriage. This kind of stuff will really test a marriage, but fortunately I found a good one. He keeps hanging in there, in spite of all my sickness, scars, and of course weirdness. I wouldn’t trade him for the world.,
Hopefully I’ll be able to join him for the 4th of July, when we will celebrate our Independence from Covid!
À la prochaine…hasta la próxima vez…until next time!
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!
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.
Two people have rung the bell while I’m sitting here getting my treatment today. My room is right by the bell, so it startled me the first time. Clapping. Congratulations. Thanks for all that MD Anderson has done. Some women with metastatic breast cancer feel dejected when this happens. We will never be finished with treatment. We will never ring the bell.
Yet, I am happy for these people as they complete this part of their journey.
I’m a little tired today. Right after I took that picture I took a nap. It’s been three weeks since my last treatment, which usually seems to go by so fast. Yet this time it seems like a long time since I was here. Probably because so much has happened since last time. I had that failed procedure I blogged about, and lots of time spent with grandkids. Easter has also been in between somewhere. It’s been a hectic month.
I did get the biopsy result back for that colon polyp. It’s not cancer, but precancerous. They call it a tubular adenoma. He referred me back to the colorectal surgeon for a consult. That happens on Friday the 13th, and then we decide next steps. Most likely this means removal of part of my colon.
A Carolina wren couple has decided to make our bluebird box their home. And I came home to some beautiful roses in my planter out front the other day. Our grass and trees are loving the rainstorms. Everything is so green and growing. Spring is definitely in the air.
Life goes on. We are staying busy and living life. We are helping Parkgate Community Church until they hire a new pastor. I’m speaking about my journey in church on the 15th of May. It’s a message of hope. A message about Living Life on Purpose. Regardless of the storms. Regardless of whether we ever ring the bell.
As I’m sitting here thinking about all the storms we have faced, I am reminded of a quote I will share that week. It reminds me to look for color in the clouds.
If you’ve been keeping up with my blog, you know that yesterday I went in for a procedure to remove a large polyp in my colon. At first it looked like the polyp was about 2 cm, but after further digging and evaluating it is estimated between 6-7 cm. It goes around a corner where the colon folds. Apparently my body is good at growing things inside. 😪 I wish I could transfer my luck to the lottery!
There are only 1-2 doctors in the whole world who do this procedure. They send challenging cases to this doctor because he is very good at what he does. MD Anderson is noted to be best in the world. I trust them. Dr. Ge has a 95% success rate for removing difficult polyps, and he was quite confident going in that he would be able to remove it, with minimal risks.
He explained the reasons for staying on a liquid diet after the procedure, to avoid tearing or lacerations, etc. We don’t want all that “stuff” to end up inside. I wasn’t looking forward to the recovery time.
The reason this polyp is a challenge is due to the fold in the colon. It’s on the far right side of my body, and hard to access. Apparently, there is a lot of scar tissue in addition to some markers around this polyp, so it appears this one has been worked on before. It has been likely growing for a long time. It is probably a continuation or regrowth of the polyp I had the very first time I had a colonoscopy eight years ago, which my previous doctor had “removed.” Dr. Ge said he would not have let this go five years between colonoscopies. Lesson learned!
I was under general anesthesia and had a very nice nap. I couldn’t tell you what I dreamt. I was having a nice chat with the anesthesia assistant about the blizzard of ’78 in southern Ohio (he was born in Dayton, just 30 minutes from my home town). The next thing I knew I was waking up and it was all over. Dr. Ge waited until I was more awake to talk to me, and then he went over 15 pages which document the procedure with pictures. It’s pretty cool, really, what they can do with those cameras and toys.
Anyway, he showed me the steps he took to try and remove it. He tried several methods and techniques as well as some expensive tools that other gastroenterologists don’t have access to. Long story short, after two and a half hours he realized it was not going to happen. He removed some pieces of it, and a couple of other polyps as well which they sent to pathology. I should get those results back in about a week.
I apologized for messing up his success rate. 😪 😫 He chuckled. He said this is the reason he gets all the tough cases. But he admitted he had never seen anything like this in all his years of working. (He looks young, so I’m not sure how long that is 🤪.) It was definitely something that he wasn’t expecting. Who knows, I may end up in some medical journal because of it.
The next step is go back to the colorectal surgeon for another consult. There was some talk about whether it is worth doing the surgery due to my current metastatic breast cancer diagnosis. I was a little offended by that, to be honest, as I believe I have a lot of years left! I don’t want this thing to turn into colon cancer. That’s how my grandfather died. But what are the risks of that?
Here’s what I found on Healthline. According to the Colon Cancer Alliance, the risk of developing colon cancer is one in 20. Doctors screen for this type of cancer by looking for polyps in the colon and rectum. Like most forms of cancer, early detection can make a big difference in survival rates. If identified at the local stage, the five-year survival rate is 90 percent. However, if identified at a later stage when the cancer has spread, the five-year survival rate is 12 percent. PSA: Get your colonoscopy!
So much to consider. If we do it, we will schedule surgery to have part of my colon removed. Stay tuned and I’ll keep you posted. The upside? I get to eat today with no restrictions.
We never give up. Our bodies are gradually dying, but we ourselves are being made stronger each day. These little troubles are getting us ready for an eternal glory that will make all our troubles seem like nothing. Things that are seen don’t last forever, but things that are not seen are eternal. This is why we keep our minds on the things that cannot be seen.
Someone asked me at church on Sunday for an update on my colon situation. I was on her prayer list, and she wanted to know when my procedure is. I am always impressed by the saints who pray for me on a daily basis. I know they don’t do it for that reason, but I’m sure there will be some extra jewels in their crowns when they get to Heaven.
It’s scheduled for noon tomorrow (Wednesday). I have to check-in at 11:00. At least we’ll miss the morning rush hour. They will access my port, and then I’ll get a nice long nap! Tim will drive me there and back. Apparently they don’t want me to get a DUI 😳.
On a walk through the Houston Botanic Garden, yesterday.
It seems like a lifetime ago when I found out I have a polyp in my colon that needs to be removed. Previous blogs have addressed the problem, consults, and where we are today. Dr. Ge didn’t bring me in for another consult; he just scheduled the procedure. I’m always grateful when I can avoid a trip to the downtown center.
It’s called a FLEXIBLE COLONOSCOPY WITH ENDOSCOPIC MUCOSAL RESECTION. It’s a little more than a colonoscopy, but less than major surgery. If they can’t get the whole polyp, they may have to do surgery to remove part of my colon. Let’s pray they get the whole thing! I have to stay in the Houston area for the first 48 hours, just in case there are problems. We have our RV down here, so that’s convenient. Praying for no problems!
The procedure will take about three hours. That seems like a long time, especially compared to the regular colonoscopies. We should be done just in time for the afternoon rush hour. I guess we can’t have it both ways. 🤷♀️ *sigh*
I am prepping…again. This time is different. I’ll have the beef consommé, the Miralax/ Gatorade cocktail, and a side of Dulcolax, s’il vous plait. Still waiting for it to “kick in” at this writing.
No food. Only clear liquids all day today (hence the consommé), as well as the next couple of days after the procedure. Then I can slowly ramp up to a normal diet by day six. I do have some popsicles and jello!
Tim conveniently had a meeting tonight, so he gets to miss all the fun 🤪😁. He will be feeding himself for a few days, so I stocked the freezer with some Aussie meat pies and Texas steaks. He’ll be fine.
My daughter introduced me to Dr. Who years ago. We watched the whole series. The knowledge has come in handy from time to time, as I now know what a Tardis is, amongst other things. It was hard to imagine Dr. Who as Queen Elizabeth’s husband in “The Crown” series, but there he was! I kept imagining he would find a red phone booth somewhere in London and poof!
Sometimes I wish I could be transported into the future when technology can eliminate the need for doctors. But for now, it’s the life I live. One specialist after another. I’ve kind of lost count, but I have many doctors following me, and they all have their niche reasons. It’s a full-time job being my own personal assistant. Fortunately, I have a calendar to keep me straight. Most of the time.
Dr. You is a colorectal surgeon at MD Anderson. She comes to The Woodlands once or twice a week, so I agreed to see her. My oncologist referred me to her when I told him about the polyp in my colon. I liked Dr. Knapp (see previous post), but it doesn’t hurt to have a second opinion.
As it turns out, MD Anderson has a team of specialists who can remove challenging polyps laparoscopically. This can help me to avoid surgical removal of part of my colon. That’s the hope anyway! Dr. You referred me to Dr. Gee. (It’s not pronounced “Jee” like I thought. The G is hard as in “goose.”) Anyway, he will perform a special procedure to get the polyp out of there.
It’s scheduled for Wednesday, April 27th. Downtown. Fortunately we will already be downtown so I won’t have to fight quite as much traffic. There’s a bit more prep than a regular colonoscopy, including a Covid test the previous day, followed up by a week-long liquid diet ramped up to normal.
The upside is, I might lose some weight in the process. One can hope! I’ll keep you posted on the outcome.
It’s 1:28 PM and the day is only half over. The morning started with a drive through traffic to MD Anderson in The Woodlands for my 8:00 AM bloodwork. Third Floor.
Then I was off to getting prepped for CT scans of the chest, abdomen, pelvis and whole body bone scan (access port, drink the peach tea contrast, inject the nuclear tracer). First Floor.
A few abnormalities happened to me today, but since I’m used to the process I didn’t panic. A little trouble with blood return. Raise your hand. Make a fist. Lay back. Cough… That did take care of it. In addition, they had too many nuclear medicine tracers in my room. Three to be exact. Fortunately, I had a savvy nurse who quickly figured out which one is mine. Is it a full moon? 🙄🙄
The CT tech took me back a little early, so that cleared up some time between scans to go and eat the oatmeal I had brought with me. I also bought some tea in their café. Second Floor.
I’m pretty good at math, but when the bone scan tech said today was a slow day with about 120 patients, I was quite surprised. They normally have between 150-160 patients every day 😳.) I couldn’t wrap my head around it. They only have the one machine. Mine takes about 15-20 minutes. How do they fit them all in? It’s one of those mysteries I may never know the answer to.
After some humorous comments by the bone scan tech about various people snoring over the loud speaker, I’m pretty sure I fell asleep 🥱. He concurred, but he said he didn’t have any recording to prove it. Whew 😅. First Floor.
I normally do these scans about every four to six months. My oncologist brought me in at the three month mark this time due to some pain in my right ribcage. It comes and goes. It is reminiscent of when and where the cancer started in my left ribcage, so he’s scanning a bit earlier than normal to be certain. I suspect all will be clear, but you never know with this disease.
That took us until noon. We should get the results in the next few days.
They left my port accessed for chemo (immunotherapy). Tim picked me up for lunch, and we left the building. We also got to pop into Circle K and say hello to Elizabeth. It was nice to see her in the middle of the day. She looks tired, but I think she is doing okay. I’m really proud of her for working so hard to keep her family afloat.
I came back early for chemo, with hopes of getting in and out a bit early. I just checked in, and pulled out my computer while I am waiting. I am an hour early, so who knows whether they will call me early or not. Third Floor.
When I opened my computer, I was welcomed by the normal MD Anderson Internet connection. But this time a special announcement came with it. A press release dated today caught my attention. This is just one more reminder of what a wonderful facility I am blessed to be a part of.
MD Anderson just opened a research center in his name, devoted to the work of immunotherapy. If you want to read more about it, click here. Very incredible work they are doing!
Jim Allison is an interesting scientist. They really should make a movie about him. He’s the one who said our immune system can fight cancer, while all the others in the field laughed at his ideas. Well, we all know about immunotherapy now, and how much it has changed the health world. Amazing stuff. He was awarded the first Nobel Peace Prize for his immunotherapy treatment. Totally brilliant.
“Mr. West?”
“Who are you looking for?”
“Mr. West?”
“What’s the first name?” I said this with some degree of hopefulness.
She double-checked. It’s a guy. Rats. Looks like I’ll be waiting a bit longer.
At least they won’t have to poke me again. There’s always an upside.
when we saw him yesterday. Or maybe he got it from his daughter. She tested positive a week or two before me. Who knows… According to the 
. 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.
