I keep getting asked what do I need and I never have an answer. Well I literally dreamed some up last night and here it is.
1. Coffee. Offer to get me out for coffee. There times I haven’t left the house in days and need to escdpe.
2. Offer to come help me clean. Crazy, I know, but Chris is so busy and some days I don’t have the energy.
3. If you have kids that are friend’s with my kids then offer to let them come over. Particularly Will. Again, there are times he hasn’t left the house in days and needs it.
4. Lunch. *See point one. Same thing.
5. Just come hang out. I sometimes don’t have the energy to leave but still want to see you.
6. Understand that I sometimes have to cancel. Appointments sometimes pop up with little notice.
7. Support Chris’s music. Come to a gig and have a drink with me while we listen to good music. It’s often free to get in and well worth it!
One regular gig is at the Lobby Bar on Western the 1st Saturday of the month from 8:30 – 10:30p. It’s nice, nonsmoking, with plenty of good food and drinks.
8. Gas and food cards. Our truck is $50 every time we fill it and that can be multiple times a week with mt appointments. It adds up fast!
There are also many nights we don’t want to/have the energy to cook. Gift cards for Chili’s, Ted’s, Zio’s, Uber Eats, GrubHub, Braums, Dominos, Jersey Mike’s, Sonic and even Crest, WinCo, and Aldi are amazing!
Dad came to visit. Unfortunately I was having a bad week and couldn’t do much but it was still nice to just have him around. Now I need to have him back so he can help me clean before my aunt and uncle come visit. Why dad? Because he’s really good at deep cleaning a space.
Dad and I
While dad was here my cousin Amber also came to visit. I don’t think I’d seen her in at least 5 years so it was a wonderful surprise to have her come! We had dinner with a lot of the family twice and she and I did lunch, just the 2 of us, one afternoon. I felt awful but it was nice to have a quiet lunch to just sit and visit.
Amber and I
After a couple of bumpy starts one of my all time favorite teachers and I managed to get-together for lunch. It’s been too many years to say when I had her but she really made a positive impression on me the year that I did. Thanks lunch Dana! Can’t wait until we can do it again. Maybe I’ll feel a little better.
Yesterday, June 4, was chemo day. I had the usual Avastin and Folfox (also known as 5FU) but then we added Irinotecan. It is colon cancer specific so my doctor, myself, and my nurse friend Diane have faith that it will knock down my liver tumors so just maybe I will have to (or is it too?) have my abdomen drained less often. Right now I’m at every 4 days and that barely gives me time to heal from the nearly 6 liters of fluid they are taking out each time. For reference each liter equals 2.2 lbs of body weight.
So far I am not suffering any of the nasty bowel side effects Irinotecan is known for either. The nurses call it “I run to the can” for a reason as I hear that side effect can get so bad. Currently it’s just the usual stomach pain and gas I get after having my abdomen drained. I hope I didn’t just jinx it.
We are also learning more about why I am anemic. My doctor ran another test on my blood between the last time I saw her and today and I learned that I tested positive for a rare antibody. I have what is commonly known as Cold Agglutinin Disease. From Wikipedia, which is oddly accurate this time, “It is a form of autoimmune hemolytic anemia, specifically one in which antibodies bind red blood cells only at low body temperatures, typically 28–31 °C.”
In my case it is not related to a secondary cancer. It’s just my system making my oncologist work. We like to have a good laugh about it. Treatment, for me, is keeping my body at a comfortable temperature and, depending on my lab work next week, adding a medication call Rituximab, Rituximab Info, which will be given once a week for 4 weeks. If we have to do the medication then chemo will be on a 4 week break as that is what the protocol calls for. We’d start it on the day of my next round of chemo, in lieu of chemo, and end with enough time for me receive another round of chemo before heading to Oregon.
*Lastly I’d like to share that my sister Ginny has set up a GoFundMe to help us with our expenses as I go through this. These range from every day things like groceries to help with medical bills. From now on this will just be a bullet point at the end of each post.
If you would like to help then the link is Donation Link. I also love Starbucks dates, lunch get-togethers and other things that a friend might come get me as I have not been explicitly told I can drive again. Even if I could I don’t have a working car and Chris’s is too big for me to reach the pedals.*
My doctor allowed me to get a tattoo! A couple of my oldest and dearest friends and I went and got similar ones. I love mine. The hearts represent each child’s birthstone with the blank one for the grandbaby.
My elephantDeidra’s elephant. Her flowers are for friends that have had cancer. The dark blue is me. She made me cry!Missy, Me, and DeidraMissy’s elephant
My dad is here!! I haven’t seen him in over a year. He’ll be here about 10 days. (Pictures and tales of our adventures in next update. )
Bike ride with Papaw.
On the chemo side of things I should be adding a new medication in 2 weeks. It has some nasty bowel related side effects so prayers I don’t get them would be amazing.
My anemia is again not what we thought. I have a condition called Hemolysis where my bone marrow is trying to turn over my red cells to quickly. We are treating with steriods and it’s slowly correcting. So no more shots, just more pills. Ugh.
The night sweats are just as problematic as ever. My doctor gave me a new medication to try. I hope it works as I’d love to really sleep.
I am getting out and around more despite all the interesting side effects. It’s helping me regain lost muscle tone and the sunshine helps my mood.
The kids are out of school for the summer. They are already bored because I won’t allow days of nothing but video games. Thankfully they’ve remembered they own bicycles!
We are also on baby watch. Tessa is now about 33 weeks and looking like she can sneeze out grandbaby out. I’ll get to meet him at the end of July when I head to Oregon for a week.
It’s been quite a while since I sat down to write. Honestly, I’ve either not felt good or we’ve had such a busy day that I have come home and slept. This leaves me not 100% sure where to begin.
Let’s start with being anemic. I’ve been fighting it this whole time and we’ve struggled to get it under control because it’s not an iron or B12 deficiency. Mine is because my bone marrow is not producing enough baby red cells. The treatment is a shot of something called Aranesp. My doctor ordered it and then…. insurance denied it. Ugh! So on Friday of last week I went in for a pint of blood. That help tremendously and I sailed through a very busy day!
This week insurance did reverse their decision and approved the shot so I was able to receive it on Tuesday with my chemo. Boy has it helped with my energy!
Blood is good
Then there is chemo. Things had been going amazingly well, until this week. On Tuesday I sat down for round #8 and within 20 minutes of starting my Oxaliplatin I developed a cough. Now I’ve had an allergy cough for several days so I did notice anything different but clearly my nurses heard something in it that brought 3 of them running. I was reacting something my nurses said happens at round 8 if it is going to at all. What fun. The IV was shut off as we all watched my head, ears, neck, and shoulders turn red. I developed a rash on my head and neck and hives across the shoulders. They gave me a good dose of Benedryl, watched me for 2 hours and then sent me home. I’ve been fine since but that means we have to put me on something different (to be determined) next time. Thankfully my other 2 chemo medications didn’t bother me.
Reactions stink
Some of the most fun we’ve had was over Easter weekend. Tessa came to visit! I got to really enjoy some quality time with my oldest baby before she has her first baby this July. It’d been a year and a half since I’d gotten to hug her and nearly 3 years since we had any real time together. Her brother’s and Chris enjoyed having her here too.
Tessa and Chris
These nuts are mine and I love them.
Tessa enjoyed getting to go to a doctor’s appointment me and meet my oncologist. She loved her as immediately as Chris and I did. She also took me to get blood and enjoyed seeing where I was every other week for chemo. We both find it nice to be able to picture where someone is when then talk about a space.
Then we had a baby shower. My wonderful godmother let us use her home and then she went all out. I have the best godparents ever. Homemade tacos from my godfather, adorable decorations and a party we will always remember because it was full of laughter and love.
My godparents, their oldest child and granddaughter
My baby, Her baby, and Me
Last but certainly not least I need to say a very special thank you to my wonderful friend Diane. When Ian was 3 1/2 she was one of his oncology nurses. She and her husband left Oklahoma after just a couple of years but we have stayed contact via social media for most of the last dozen years or so. They moved back just a handful of months ago.
The minute I was diagnosed this woman stepped up and had been a godsend to Chris and I. Just about any time Chris can’t take me to an appointment then she can. She sits with me during chemo, drags me out of the house when I’m about to go stir crazy, and will text me just to check in. I can’t say enough good things and I am incredibly grateful to have her in my life.
It’s been a while since I’ve had the energy to sit down and open up my computer to write an update. Things have been busy around here and they don’t all concern me and my treatment stuff.
Way back in November, a week after I received my diagnosis, I got a call from my daughter who lives in Oregon. She’s 22 and has been out there about 5 years now. Well she hadn’t been feeling good and called for advice. After ruling out things like the common cold and flu I asked if she’d done a pregnancy test. Hours later…. it was positive. On February 28 we found out that it is a boy. She and her partner will welcome Oliver James “Jamie” sometime around July 18th. I hope my doctor allows me a few days to travel and get baby snuggles.
January 5th, just before I started treatment, our oldest son turned 17. I’m not old enough to have these big kids! On January 18th he met his own treatment milestone of being 13 years off treatment. Whoo Hoo!!
My own treatment seems to be moving along though you can tell by the picture that I am already over it. This too shall pass and in a year or so we will be able to push all this behind us. There is a marker in my blood that my doctor tracks called my CEA number. I don’t understand much of it but I think it tells her how my cancer is in my body. The normal adult’s CEA should be 0-5. Mine started around 3900. On February 26th it was around 2800! This is great news and we want it to keep dropping. It shows the medication is working. I’ve already told my husband that he and I are taking a real vacation, just us, to celebrate.
I am still fighting with my liver. I am retaining at least some of the fluid it should be processing out of my body and have to have it drained from my abdomen every 7-14 days. It’s not a procedure I would wish on anyone but I am glad they have a way to remove it. It is interesting looking 7 months pregnant an telling people I’m not. They look so confused.
I am fighting neuropathy in my hands in feet. For those that don’t know, it’s a condition where you loose feeling in your extremities, almost like they are falling asleep. It started about 3 weeks ago. My doctor has put me on a nightly medication that is helping some. I also live in gloves, socks, and blankets. Thankfully it’s just uncomfortable and not usually horribly painful thus far.
Most recently my mom was here for 2 weeks. For a family that is always taking pictures, we didn’t get a single one of the 2 of us! I think we were too busy having fun. I miss her already (she has lived in Oregon close to 7 years now) and want to be able to bring her back ASAP.
The rest of the family is holding up. My boys, Chris included, have been so helpful during all this. Sure the kids fuss but they are kids and stuff does get done because they understand I just can’t most days. My stamina lasts about an hour so I try to save it to just hang out with the gang in the evenings before my body sends me to bed by 10 pm.
Until next time… Thank you for the love, prayers, and trinkets that make this a little easier.
December started off with my colon resection. The surgery went well and I was out of the hospital in 4 days. I looked great and felt it too. Fast forward to a few days later and I started having more days where I felt bad instead of like thing were improving. My surgeon said I looked fine and that was that. Fine was not the case. On January 12 I ended up in the ER because I was so completely miserable. Turns out I had been retaining fluid and it would have to be drained.
A call to my oncologist and my procedure happened yesterday. They removed 3.5 liters! While it was good to get the fluid out, my back started spasming and we had to have the on call oncologist call me in a muscle relaxer. It’s worked great thought everything is still tender and I imagine they will be for a little while. Let’s hope that doesn’t have to happen again, though it is a possibility.
Yesterday was also my first day of chemo. As you can see in the pictures I came home wearing a pump. One have my medications has to be delivered very slowly over 46 hours and the home pump is the easiest way. It is designed to let me move around so I’m not stuck in a chair for days.
I also received the medication that can make you very sensitive to cold. Unfortunately I have developed that side effect. Right now cold drinks make my mouth, tongue, and throat feel like your hands or feet do when they are just starting to go to sleep. It’s no fun because Sonic ice has been my best friend.
The other side effect, so far, is that same going to sleep feeling in my finger tips. My oncologist says it is perfectly normal so I will learn to work with it.
While yesterday, Jan 15, was tough, today is a bit better. My back still hurts but I am no longer in tears. My youngest sister sent my a present and my bath tub pillow arrived. Let’s hope tomorrow is a little better than today.
Thank you all that have called, come by, and set cards. I appreciate you!
I spent about 3 1/2 days inpatient at Mercy. My body cooperated much faster than anticipated and, after a Wednesday evening surgery, I was home on Sunday afternoon. Since then it’s been all about healing.
Thank you to everyone that came up to visit!!
The days following my discharge had Chris running all over. He took the week off to get Ian to and from everywhere he had to be and to manage his own very full performance calendar.
In the middle of it all I had an oncology check up and chemo begins January 15.
This week has been a little slower. Both boys are out for the break and Chris has been able to put in some hours at work.
My healing is progressing too. The swelling is slowly going down and the pain is less each day. Did you know that prescription narcotics can zap you taste buds? I didn’t until it happened to me. I’ve been able to move to over the counter pain killers during the day and prescription ones at night. It’s helping, slowly.
I saw my surgeon today and he likes how I am healing too. 4-6 weeks and all the swelling should be gone and incisions healed. For now I have to just have patience and rest.
Thank you to everyone who has come by, called, texted, etc. We appreciate it.
On Wednesday night, 12/5/2018 I had surgery to remove the section of my colon that was housing the primary tumor. My surgeon, Dr. Ellis, says things went very well and the only thing I am currently experiencing is some pain but nothing I can’t manage. The staff here at mercy has been incredible. We hope that I will be out of here by Monday.
I had to experience my 1st blood transfusion today. I had never had one before. Thankfully it was relatively painless. They’re also giving me a couple of different pain pills and I think maybe 1 is an antibiotic but I forget right now. I found it funny that 2 of the medications that are giving me are things we have in the house for Will’s migraines.
We are still not exactly sure what we need. I’ve had several visitor tours today and that’s actually been really nice . If anyone has time tomorrow before the weather hits and wants to come hang out with me please send me a Facebook message or text me if you have my number.
Over all this has been a really good day. I’m hoping tomorrow is just as good.
As I head into my few days in the hospital I ask that you please do not just drop in to visit. My surgery is late in the day today and I have no idea how quickly I will feel up to having guests in my room. Please, if you wish to come by while I am inpatient, message or call either Chris or myself first.
I also ask that you please do not bring flowers, wear perfumes, or bring anything heavily scented into the room. I am allergic to most of these smells and wish to have my stay be as short as possible.
Lizzy and Jenny made a special stop just to say hi.
This week started out with an unexpected surprise. My wonderful friends drove an hour out of their way to make a quick stop in OKC on their way back home to Missouri from Texas. We hadn’t seen each other in about a year and a half as our schedules are always so busy.
I am so glad it worked out! We only had about 45 minutes, as they had to keep moving to attempt to beat a snowstorm, but it was well worth it. Plans have already been made to get together again in the spring and I can’t wait. Having things to look forward to does wonders for my mental health.
Fast forward to Wednesday and I had another CT. This time it was of my entire chest. While I have not spoken to the doctor about the results from what I can tell there are no surprises. We know I have nodules in my lower lung lobes and that seems to be what the report on my account says as well.
Thursday found me back in outpatient diagnostics for another EGD (an upper scope). This one came with an ultrasound and biopsies of my pancreas and lymph nodes around it. As you may remember there was some concern that my pancreas was involved. Well.. more good news! It’s fine! The lymph nodes are involved but not the pancreas. This means the battle to beat this is a little bit easier and we’re breathing a small sigh of relief.
Then today happened. I spent just shy of a year working for my alma mater and my former team sent this card. Today’s been a day where I’ve felt largely sub-par and this definitely brightened it. This group knows how to make someone feel important and cherished. I love them and I thank them for everything.
Again I want to thank everyone for their thoughts and prayers, good vibes, food, calls to check in, etc. We are currently focused on surgery on Tuesday and getting through the next week. If you are friends with Chris on Facebook and/or have his cell number please reach out and check in on him as he has a million places to be while I am not in a place to help.
Cancer x 3 