charlevo

No place like home

There’s no place like home for the holidays 🎶.

I am very happy that I will be going home tomorrow (Wednesday 11/22) and can spend the Thanksgiving holiday with Glen, Evelyn and Maddy.

The other thing I am happy about is this morning (Tuesday) they cleared me to be “independent” which means I can get up and move about the room, use the restroom on my on and so on. No more calling the nurses for everything.

I’ll have spent a week in rehab when all is said and done. Was it a good choice to come here? Probably. The way the assessments run, the day of the week I arrived, and other factors meant that I probably was here a few more days than I needed to be but it’s fine.

I will continue to walk with the support of a cane. I have to wear a “CTO” brace. It’s a cervical brace that stabilizes my neck and connects all the way down to a belt. Not gonna lie, not very comfortable. I can take it off if I am lying down or inclined less than 45 degrees. I am not sure how long I have to wear the brace, likely up to 6 weeks post-surgery.

I don’t have much pain, partially because I am still on narcotics (oxycodone). There is minor discomfort in my upper back between my shoulder blades where they did the surgery.

The fabulous news though is that all the previous pain I had is gone so the surgery did indeed relieve the pressure on my spinal cord. I no longer have any numbness in my torso or legs.

So, hopefully this surgery and the one last month on my lower back have taken care of any pesky tumors. I just need to get my strength back up.

Next week I will meet with my oncologist and pending clearance from the surgeon and how my bloodwork looks, I may start my next line of treatment. The surgeon and oncologist will consult to determine if I’m strong enough to start the meds. I had major surgery and they want to make sure I’m strong enough to handle a new drug. The medication is an oral chemo called Xeloda (“Za-low-da”) (Capecitabine).

Overall, I’m looking forward to going home, a bit anxious about the next line of treatment, and will need to figure out a plan to return to work. My company has been absolutely fabulous. I basically called my boss the day I needed to go to the ER and told her the situation, she said “we’ve got you covered, go take care of yourself”.

It will be the four of us for the holiday. Making some food, watching some football, maybe working on a puzzle. I’ll be pushing for getting some Christmas decorations out, not sure how successful I’ll be.

I hope you all have a lovely, long weekend whatever you decide to do.

They tried to make me to go rehab and I said yes, yes, yes!

Unlike Amy Winehouse, I was more than happy to move from the hospital to a rehabilitation facility. That happened today. I’m glad to be done with IVs and continuous heart monitoring.

I was in the hospital a little over a week. Everyone there was helpful and professional. I was there long enough, and feeling well enough that they got to know me a little which was nice.

Today they officially waved goodbye. I had a transport van move me in a wheelchair to Broomfield Hospital in Broomfield, just down the road from us.

The transport van had a ramp for a wheelchair and they secured it down before the short (20 min) drive. Unfortunately, I didn’t have any decent clothes to change in to so I felt just as disheveled as I look.

The third floor is a rehabilitation facility. I landed here late afternoon. Just enough time to get some dinner and answer a huge list of questions.

Glen will bring me a bag of clothes, pjs, toiletries tonight. The goal while I’m here is to get me as independent as possible and ready to walk back in the door at home and just live life.

How long will this take? Unclear. I have decent strength, which is a plus for me. I don’t know how well I can do things so I suspect there will be an assessment and then each day we will work to get me ready to be home.

I’m looking forward to getting started.

Related to my surgery – I will go see the surgeons assistant next week or just after the holiday. She will reassess my brace and see if she can lift any of the restrictions I have for movement.

Related to my cancer – I have an appointment with my oncologist after the Thanksgiving holiday. We will look at starting a new treatment line then. The treatment is an oral chemo which can be hard on the immune system. It is a delicate balance to start a new treatment when you are trying to recover from surgery.

I have full confidence in my medical team and will go with their recommendations. I’m thankful for friends far away and also close by. For lovely gifts to pass time in the hospital and visits with good coffee to do the same.

In the meantime it’s one day at a time. Get out there and get some fresh air on my behalf. Love to all.

Onward!

View out my window from the rehab facility

Donna 1, Tumor, 0!

Hi everyone, this blog post is written by a celebrity guest, Evelyn Romine, daughter of the beautiful Donna Charlevoix. I am here to inform you of the current updates with my mom’s medical situation. My grammar and writing ability may not be at the same level as my mom’s, but I’ll do my best.

On Wednesday, November 8th, my mom went to the local medical center in Boulder, where she receives most of her treatment. This visit was an effort to get the current surgery to remove the tumor on the T3 moved up to a sooner date (initially scheduled for November 20th at the Swedish Medical Center). The pain had become more severe, and after an increasing feeling of numbness in her torso, the concern of her medical team shifted to paralysis. After multiple appointments, she was instructed to go home, clean up, pack a bag, and check into the Emergency Room at the Boulder Medical Center later that afternoon, as the surgery would be performed at that location on Friday. This was for a few reasons: 1) this would allow the insurance to go through on time for the surgery. 2) with her at the medical center, they could better monitor and help with her pain.

I did not get to see her on Wednesday when she checked in, but my dad and sister were there with her for that process. She was in the ER in a bed until 11 pm that night when they were fortunately able to move to an ICU overflow room that was bigger and, from my understanding, comfier (more pillows!!). I visited her on Thursday morning, and she was in pretty good spirits. I think that not having the stress of having to take care of herself and manage everything on her own was lifting a huge burden. (I also know that she’s a warrior and was doing her best to stay positive for everyone).

The plan on Thursday was to prepare for surgery. She was relocated to a new room that was on the first floor (the oncology section). Not too much happened on Thursday, but you could consider Friday to be quite a bit more action-packed. My dad went down on Friday morning to be with her before the operation, yay dad! However, (as per usual) they were running behind, so she didn’t get into the OR until after noon. While the surgery was similar to the last one on the L4 and L5, this one was much more extensive. The last tumor was coming into the spine from the side of this skin, whereas this stupid little bugger was in more of an hourglass shape. The tumor had almost completely rotted away the T3, meaning that a majority of it had to be removed. Because of this, they also had to put in pins and plates which are braced by the T2 and T4 to stabilize the area. The surgery was around 4 hours from my understanding.

I arrived at the hospital before 5 pm and when I got there, my dad had already been there waiting. My sister arrived a bit later and the three of us hung out in the waiting room for a while. They didn’t let us see her for a few hours because she was having trouble with nausea in the wake-up process. Because of the scale of this surgery, she’s staying in the step-down ICU unit. When fe finally got to see her she was feeling okay pain-wise, and all things considered was looking pretty good! The surgery went fine. They were able to remove a good amount of the tumor. Unfortunately, they couldn’t get it all because it had wrapped around her spine, making it too difficult to reach. From my understanding, the surgeon was pleased with how it went. Post-surgery, she will have to wear a neck brace (pictured below) for 6 weeks. Another important doctor order is NO BLT!! (Bending, lifting, twisting – sandwiches are still on the table!). The brace should help with this.

Today, Saturday, November 11th, it’s not looking like she’ll be out of here soon. My dad and I are predicting Tuesday at the earliest. From my time with her today she’s seemed okay as well. I was able to help her get some food, and apparently, the hospital food isn’t too bad (there’s an extensive menu). A popular item for her has been the apple crisp! Yum! This morning she got fitted for the custom brace and has been rocking it like a champ. Physical therapy came this afternoon, and she was able to sit up for the first time. Woohoo! Not only sit up but stand as well! She hasn’t moved yet, so maybe standing a few times and walking is tomorrow’s goal. Her blood pressure during these movements was quite low, and she was having a hard time breathing, so that wasn’t what we wanted. But, in all fairness, she’s being given a significant amount of drugs, and her body is probably very confused after all the, pardon my French, shit it’s been through.

Throughout this whole process, I’ve been really impressed with her optimism and forward thinking. She trusts science and believes that she’ll be feeling better soon (I, along with my family, believe this too). She has always been the woman I look up to the most, and I know as nasty as this cancer gets, she will continue to fight. This whole situation sucks. Like actually sucks so so bad. But I’m speaking for GDEM (Glen Donna Evelyn and Maddy) when I say thank you to the people who have sent love and support. It’s allowed our family to continue functioning in these quite frankly grim times and means a lot.

The goal is that hopefully this message can answer some questions so my mom doesn’t have to go through as much mental effort answering everyone. You are so awesome if you’ve made it to the end of this email, and I hope whoever may be reading this has a wonderful day. Okay, this is the end of my short novella, so goodbye :).

More Back Surgery Needed

My lower back surgery was successful! I no longer have pain in my hip and leg. So grateful!

Unfortunately, about a week after my surgery I developed significant pain in my upper back that would migrate to my chest. It’s gotten progressively worse. I’ve been meeting and talking with both my oncologist and my surgeon over the past few weeks.

Results of an MRI from last week shows that I have tumors pressing on my T3 vertebrae which is located between my shoulder blades. Pain mystery solved!

The tumors are pressing on both sides of my spinal cord, squishing it into an hour glass shape. Not what we want. The surgeon is aiming for surgery ASAP to do the same procedure (laminectomy) on the T3. Surgery is not scheduled at this time and should happen within the next 2 weeks.

I’m comfortable with this plan and have 100% confidence in the surgeon. I am hoping for the soonest possible date for surgery!

During this time I am not receiving any treatment for my cancer, which is nerve wracking. So, the sooner we can get this done, the sooner I can start my new medication. Obviously the medication I was on stopped working so we cross off that treatment line and move to the next.

Having metastatic breast cancer (MBC) to the bones only is “good”. Much better than when visceral organs become involved (lungs, liver, brain). However, there is no good MBC. I mentioned previously some of the complications bone mets can cause, I think I left off paralysis. So, while I am confident my medical team will get me fixed up as soon and as best as possible, the reality of what I and my family are facing is daunting.

A huge thank you to friends who have provided meals, conversation, brought coffee and other gifts and especially to Amy for driving me to medical appointments in Denver when Glen can’t do it.

We can’t do this cancer thing without you and are so very grateful.

If you are feeling a little helpless and can spare a buck (or twenty) it’s not too late to donate to my fund raiser for research toward new treatments of MBC. https://donate.metavivor.org/fundraiser/4523169

And as always a few photos of the past month. Be well my friends. Onward!

Surgeon check in

I’m almost 2 weeks out from surgery. This morning Glen and I met with the surgeon. He is pleased with everything. Importantly, it appears as though this procedure has eliminated my leg and hip pain! I can start moving around a bit more, but no Cross Fit, per the surgeon. 😀 The tumors were sent off to pathology, there were no results as of this morning.

About a week ago I started to get a pain in my upper back / neck and it’s gotten progressively worse. So much so that I ended up going to the Emergency Room on the advice of my nurse navigator.

The good news is that anything life threatening was ruled out: heart is fine and there are no blood clots. Also good is that mornings are least painful and sometimes I can control it with medications (muscle relaxer and oxycodone).

It’s not clear what is causing the pain and all the medical professionals are scratching their heads a little bit. The surgeon ordered an MRI for next week and I’ll see him again in early November.

Meanwhile this weekend we had a fun weekend of mini-golf and pizza. Last weekend Maddy celebrated Homecoming. Gotta squeeze in the fun of life wherever you can.

Post-op Report

Two days ago I had back surgery, a laminectomy with tumor recession to be exact. The surgeon removed part of my L3 and L4 vertebrae to relieve pressure on my spinal cord. It looks as if there was tumor pressing on the cord. The tumor was removed, along with bone, and sent off to pathology. It will take around 2 weeks to get pathology results.

A general diagram of the procedure I had on L3 and L4.

The procedure was about 2 hours and there were no complications. My recovery was fine and I opted to stay one night in the hospital.

For two weeks I cannot bend, twist or lift anything 10 lbs or heavier. Before I was released both physical and occupational therapy came by to help me navigate stairs and getting dressed. I’m feeling confident that things will go fine, although I will need to rely on Glen and Maddy a lot.

I don’t have much pain right now, probably because I’m taking 20mg of oxycodone every 4 hours! I had a restful night at home and the cat snuggled up next to me. He missed me!

I have a post-op appointment in 2 weeks and hopefully some of my restrictions will be lifted. If I’m feeling better by next week I’ll go back to work. I work remotely and have a lot of control over my schedule so I’m not too concerned about that.

Thank you for all the messages, flowers and texts. I really felt the love and cannot express how much that meant to me. I was very nervous going into this – who wouldn’t when they are messing around near your spine! Your reaching out really helped calm my nerves so thank you for doing that!

Evelyn will come home this weekend to help out. I am looking forward to that. Maddy has homecoming this weekend and so we won’t see much of her! Life continues on!

Gorgeous orchid from my secret admirer (Nancy)

Onward! New meds and surgery

Lots going on here so I’ll try to summarize for those trying to keep up.

Surgery. I still have continual pain in my lower back, right hip and leg. It’s debilitating and very frustrating to deal with and try to control. An MRI of my lower back shows that I have tumor pushing on my spinal cord. It’s not clear if this tumor is “new” or “old”.

The surgeon (neuro-oncologist) is recommending a laminectomy and tumor “rescission”. He will go in and remove part of 2 of my vertebrae as well as any cancer tumors he sees there. He is very confident this will eliminate my pain (🤞). Note: I find surgeons to be over confident in general.

Surgery is scheduled for Wednesday October 4. I will stay one night in the hospital. I should be up and walking about the same day.

New Meds. The results of my PET scan show the cancer is still limited to my bones (no visceral organs). This is very good! It also looks as though I have been having very slow progression over the past year.

My oncologist wants to stay ahead of the cancer (me too!) and recommends switching medication. I have already stopped taking Ibrance and in late October I will switch to Xeloda (z-low-da). These oral meds are taken twice a day for two weeks and then a week off.

I had a great run with Ibrance – over 4 years and 50+ medication cycles!

I know several other women on Xeloda so there is a support network to plug in to. I’m hoping my side effects are minimal and that my cancer hates this medication!

I will keep taking Xeloda until it stops working. This is determined by doing scans and comparing them to previous scans.

Today I will see my primary care physician to have him sign off that I’m healthy enough to have surgery. Then I’ll be calling my insurance company to see where approval for the surgery is.

Other than all of this, it’s a typical fall day here in Colorado with leaves starting to turn, lots of sunshine, and a high in the mid-80s. I’m looking forward to getting my back/hip/leg in order so I can go out and walk again. Take a walk for me – short or long – and send me a photo.

Bye bye Ibrance. You served me well, I’m still disappointed that you failed me. Do better, medicine!

My Top 5 Breast Cancer Organizations

October is Breast Cancer Awareness Month (BCAM) and it’s always a good reminder to be cautious about how you might support breast cancer.

Many organizations jump on the pink bandwagon and very little if any of your donation goes to support patients or research.

Your best bet for supporting breast cancer is to donate to a reputable organization. My favorite are those that focus on research. Research is how we get new treatments and hopefully a cure.

I posted these last year and share them again. Some of these organizations also have a focus on Metastatic Breast Cancer (MBC). Recall that MBC is the *only* breast cancer that kills, yet receives much less funding that earlier stage, curable breast cancer. Reach out if you want more info. I could talk all day long about this!

Breast Cancer Research Fund: Dedicated to ending breast cancer through support of research; 41% of their research dollars go toward MBC ($21.6 million annually).
Metavivor: The only organization dedicated to only MBC research and support. 100% of funds raised go toward MBC research. In particular check out the #LightUpMBC campaign where landmarks across the country will be lit up on October 13 in the colors of MBC (teal, green and pink). I am raising money for the #LightUpMBC campaign, you can view my fundraising page here.
Lobular Breast Cancer Alliance: Alliance of organizations, doctors, patients, and allies dedicated to learning more about lobular breast cancer. Invasive lobular breast cancer typically does not form a lump and is difficult to detect on imaging, so difficult to diagnose. I have invasive lobular breast cancer.
Living Beyond Breast Cancer: Resources to help people impacted by breast cancer, especially those living with MBC and those diagnosed under 40. I participated in advocacy training (Hear My Voice) led by Living Beyond Breast Cancer.
Young Survival Coalition: Focused on supporting young adults (<40 years old) diagnosed with breast cancer. (I was first diagnosed when I was 39 and this organization was a life line.)

7 am check in time for a 7:30 PET scan. No coffee allowed before the scan. So glad they have early morning appointments!

MBC – the “gift” that keeps on giving

Happy September friends and family.

I feel like I missed summer so I’m being intentional about eating lunch outside in the sun! I hope you are still getting outside now and again to get some fresh air and vitamin D.

This past week was a busy one medical-wise. I had my regular monthly appointments. Additionally I had an MRI on my lumbar spine region (lower back) and met with a neuro-oncologist.

My medical oncologist is lowering the dose of one of my medications (Ibrance). There are 3 dose levels. I’ve been on this highest dose for 4 years. Apparently after being on it for that long it is common for white blood cells to start to tank (neutrophils specifically). So, I will go to the next lower dosage. It should not affect the efficacy of the treatment.

It’s interesting that the default is to start patients on the highest tolerable dose of a drug and then lower the dosage when there are side effects or complications. There is a group of patient advocates that are trying to change this so doctors don’t default to the highest dose to start.

Anyway, this change should not affect my treatment. The change will happen next month.

The neuro-oncologist believes he has found the source of my nerve pain. It appears that I have tumor on both the L3 and L4 vertebrae. The tumors are on the inside of the vertebrae and pushing on the spinal cord. That is what is generating the nerve pain in my hip and leg.

His recommendation (which I will follow) is that he do surgery to remove the tumor material. It’s not scheduled yet, hopefully will happen within 2-3 weeks.

We don’t know if the tumors are new or if they are “old” and just got pushed/moved around. The first step will be to get me out of constant pain. The second will be for my oncologist to determine if the cancer has awakened or is still sleeping. I won’t have that information until early October.

With Metastatic Breast Cancer (MBC) the cancer spreads beyond the breast. I have bone only disease. This is good in that bone only disease does not kill you. However, it can mess you up royally. The cancer in my spine has now made it very difficult to walk. The current nerve pain only allows me to lay and sleep on my left side. It’s possible though that the bone disease can cause incontinence and other very unpleasant things. So, when I say “Things could be worse.” They could, indeed.

Maddy has started her junior year of HS and a new year of dance. Evelyn is moved in to her apartment and in the thick of classes as a sophomore at University of Colorado Boulder. (She is VERY excited for the football game tomorrow! Look for her on tv.) Glen finished his fly fishing trip and will be traveling for work next week.

I have work travel scheduled (which will likely be cancelled). I also am/was planning to go to a breast cancer symposium in Pittsburgh, attending as a patient advocate. We will see how all this travel shakes out with impending surgery. I don’t have a great feeling about this travel happening either.

This back surgery is a bump in the road. One thing at a time. Thanks to everyone for your support and love. Right back at ‘ cha!

We take our spine for granted! Stop doing that!

Non-cancer update

I am dropping a note but it’s not exactly cancer related. I’ve had pain and discomfort in my lower back and right leg since April when I had a bad fall. I’ve had 2 procedures since then to try to resolve the issue, with no luck.

I’ve been referred to a neuro-oncologist. Amazingly I was able to get an appointment for this week! So, I will go to meet with him (Dr. “Eddie” as he is referred to) and see what he has to say.

Those of you who have been dealing with chronic pain, I salute you. This is no joke, for sure.

In spite of that, I’m trying to make the best of the last days of summer. It’s been raining quite a bit here so my time sitting outside is a bit limited. Fortunately, we have big windows that look out on to the back yard filled with flowers.

In other news, Glen is wrapping up his annual fly fishing trip in southern Colorado. Evelyn is moved in to her first apartment. Maddy started her junior year and lasted 2 days before she came down with COVID. She missed the entire first full week of school, she also developed an ear infection. She is on the mend now, but it’s slow. No first day of school photos this year either. I have my regular oncology appointment next week (labs, office visit, treatment shots).

Our lovely cat, Toulouse, really needs a companion. I’m planning on visiting the local humane societies on a day when I can get my discomfort under sufficient control.

It’s hard to believe it’s almost September, I hope you are making the most of each day and your summer has been one filled with fun and making new memories.