I am back in the hospital. I was home for a whole day on Friday, February 12. Saturday… started downhill and didn’t stop.
I had to ask Gabe to help me to the restroom. On the way, which is not far, I told him I needed to sit down. He reached for a chair and I fell. Backwards. As if i were a trinket a cat knocked off the table.
I landed on my poor dog. He’s a pretty big guy, about 100 pounds. He squeaked like a mouse. He was not injured. My head hurt for two days.
Gabe called our eldest to help get me up. They got me to where I needed to be and we made the decision to call an ambulance to take me to the hospital safely. The roads were snowy and icy.
I was not able to was not able to walk upstairs. I couldn’t breathe. My travel oxygen machine was hooked up.
The EMTs checked me out, then put me on this stairclimber. Max was jealous and scared. The thing had tank wheels on it. I miss my kids.
I felt like we were in the ER for forever. If I had realized how long I would be staying, that thought would never have crossed my mind.
My new stay did not start well. Does any hospital stay start well? I’m not here for the five star rating.
I was told that if my breathing kept failing, I would be in ICU on intubation. I would be asleep most of the time and woken up about once a day. Or was it every couple of days?
I was sobbing after the doctor left. I worked on exercising my lungs.
I had four masks within two days. All for different reasons.
Within the first few days, I went up and down with my breathing. It has been almost a week and we are still working on the proper oxygen flow. The goal is to have it as low as possible. This machine was meant for extra oxygen flow. I was to try to keep it in the low 90%.
I have been using the lung exerciser. I need to go up. I want to go up line by line. It has been helping. I do have trouble standing up. I have trouble sitting in a chair.
I have started to improve. I have things to do. It has been over a week. I was able to sit in a chair to eat lunch on Thursday, February 18. I use a walker and require help in getting up.
The doctor was more hopeful. He said he couldn’t be totally positive. He was pleased that I was displaying progress. I have been here longer than I thought. I hope to go home before another week passes.
I went into the hospital on February 13 and left on March 3. I do not like being in the hospital that long. The best feeling in the world is a shower at home afterwards.
I needed time to process everything. In a way, I was forced to as Jesse required my iPad for his schoolwork. It was really the best thing for me.
An unimaginably awful amount of happenings came about within two months. My family is hurting. We will hurt for a long time.
Cathy died on January 26. She was an amazing and beautiful person. I have known her for more than half of my life.
She read books faster than most people eat dinner. She created the most magical things out of yarn. That is a witchery beyond me. Cathy was not afraid to try new crafts. She was inspiring.
Her catch phrase was “oh, well shit.” It’s classier than my “fuck, or fuckity fuck.” Not that I will stop.
I hurt for myself. I hurt more for Gary, her sister, children, grands, the people that will always be part of our family. So many people loved her.
This is where I am indebted to the school board for depriving me of technology.
I am thankful.
With the crap that happened in December, I am still here. I was told I would need to contact palliative care. I did not need them nor did I go to hospice.
My father-in-law, John, and I were hospitalized with Covid-19. We are still recovering. We are getting better. Recovering from something like this is hard. Our lungs and muscles are still weak. The fatigue is pretty awful. We are slowly overcoming the bastard.
I will always be thankful to have a mother-in-law like Cathy. I truly have the best in-laws. All four of them.
I am grateful for my mom. She has been helping with my boys when I can not do the laundry or wash the dishes. Covid zaps the energy out of you.
My heart will continue to mourn.
I will continue to savor the small things and celebrate the big things.
It started out with a household member diagnosed with COVID. This led to everyone else being tested. I was the only one who came up positive. Ugh.
Everyone tested again. By the time I found out, I must have just smeared it everywhere. Everyone came back positive. *Everyone*
My father-in-law, John (who lives in the household), and I have had to go to the hospital. I am at home now and on oxygen. John is having a harder time. He is stable. I am still very upset about it.
I watched the Inauguration and enjoyed it so much. It was so beautiful. Lady Gaga was wonderful, Garth made me cry, and I couldn’t get enough of Amanda Gorman. It all made me so happy.
I texted my other mother-in-law, Cathy (who lives with Hubby’s dad), about Wednesday’s happenings. It was a good day. Then it wasn’t.
Cathy had a stroke that night. It was bad. She was transferred to my hospital and put on life support. She was so close to me, but I couldn’t see her. I cried almost all day on Thursday.
I went home Thursday evening. I have a huge oxygen machine next to my bed. I am tethered by a nose line. I have enough to walk around my area. Which is important for keeping clots away. It is good to be able to use the bathroom.
I had a rough time on Friday. My breathing had improved before I came home. It did the opposite that day. I was gasping for air every time I got up. I had improved on my lung strengthening device and it went backwards. It was as if I was starting everything over.
It might have been the trauma from two of my favorite people being so hurt. It might have been the new oxygen machine. Whatever it was, it brought my spirits even lower.
For about 2 or 3 weeks, I have been waking up at a stupid time. It’s usually 4:30 am. Today was 2:30 am.
I have had pressure in my head every morning. Ibuprofen will calm it down, but it really isn’t a normal headache. I spoke about the fucking tumors in my previous post. I think they are talking to me. It’s very rude. I would like to sleep. I am just exhausted.
I have enough going through my mind . I don’t need the fucking tumors to decide to converse with me at an unreasonably early hour of the day. So damned rude.
The perk is starting my coffee early. I don’t start it as soon as the fuckers wake me up. I do try to get back to sleep and will just lay in bed for two or more hours. Ugh.
Today’s coffee cup has Shakespearien insults on it. It felt like the cup I needed this morning.
I do see my doctor in a few days. I don’t know if this is something that can be fixed, but I am hoping.
I guess December 8, 2020 will be memorable to everyone but me. I have no recollection of that day existing. It was Monday, then Wednesday.
I have been told about the events that occurred. I have been told of the events after. I have had to ask people to speak with my husband. He knew what happened. I don’t.
I sent the text to my husband. He was at work. He tried to call me back and I wasn’t making sense. We live with his parents, so he called his mom to have her check on me.
I don’t know what happened. I have been told that an ambulance was called and Gabriel came home from work. I scared my family. I would probably be more upset. I think I should be more upset.
The EMTs helped me up the stairs and into my car. On the passenger side. Gabriel drove me to the ER.
I know that I had tests. Blood work, MRI, probably a CT. I had new tumors growing in my brain. My blood pressure was low. My heart function would show as lower from an echocardiogram the next day.
I have used up my brain radiation. I am not allowed another whole brain, which would be the treatment for all those little fuckers. I think I am still allowed targeted, but there are too many.
The chemo was working really well for the rest of my lesions and tumors. It is just making my heart not so good.
I was suffering from a seizure in my brain. This would be why I was having so much trouble talking and can not remember Tuesday. I am now taking anti-seizure medication.
The very low blood pressure would be the cause of not being able to stand up.
I was taking heart medication with the intent of keeping my heart function above 50%. I am not taking that any longer and my chemo has been lowered in hopes of helping my heart get back into the 50’s. There is also some hope that it will break the brain barrier and get the brain tumors.
With the possible seizures, I am no longer allowed to drive. I just got a new car. I love my car. At least this gives me a chance to give my oldest hours for his driving class. In my new (used) Rogue.
Palliative care has been brought up. I had a team when I was first diagnosed. I was very sick at that time. I am so mad. I have plans. I need to prepare things for my family.
It has now been a few weeks. I have been the recipient of the generous side of humans. We have had food delivered. People went a little crazy with gifting my kids. Someone picks up my kids clothes, washes them, then returns them.
The Warrior Sisterhood left a gift in my yard. I cried.
I can’t think of how to properly express my gratitude. I wake up most mornings with a headache or a back ache bad enough for pain meds. I have trouble walking a good portion of the time and I now have a loathing for stairs.
Having help with food and clothes is fantastic. If any of you read this, please know your actions have been absolutely appreciated.
I don’t know what my future will bring. December 8 scared all of us. My doctors and care team are working hard to keep me going. My family and friends are working hard to keep me going. I love all of you.
I did not write a Pinktober post last year. I decided to put it on the back burner as October 2019 was a bit crazy for me.
I was dealing with the after effects of a really bad reaction to a chemo I had started. Gabapentin did a good job of trying to kill me. It was supposed to be a more gentle treatment. I went to the ER twice a few days after two different chemo treatments. The second time was what put the puzzle together.
On September 25, three days after chemo, I went in with a 103 F temperature and blood pressure that was so low, I had trouble walking and standing. Septic shock was the consensus, but no source of infection. I was kept in ICU for a few days until my mysterious condition stabilized.
On October 10, 4 days after chemo, I went back to the ER with the same issues. My oncologist put a quick stop to the chemo and started me on Navelbine.
I still had a pretty successful Witches Tea Party. Fuck cancer.
With that out of the way, you get to have some anger and sorrow-filled preaching.
Kim Wolski was one of those amazing people that I should have met in person. I can guarantee that we had passed each other a few times. She moved from Minnesota to Florida at about the same time I moved from Florida to Minnesota. She had stopped in Jax on her way to Tampa and even went to Einstein-a-Go-Go. I loved that little club.
Cancer murdered her December 10, 2019. She was beautiful inside and out. She was smart and a motivated MBC advocate. She was a wonderful mom. I hate saying “was.”
I did not know until March 2020 that Kim had died. I have been staying largely away from social media. This is the news that I miss out on. It is frustrating, maddening, and devastating.
To pay tribute to her, I wish to post something she had posted, and given me permission to write into my blog.
Kim Wolski 10/26/2018 “Actually…. here it is: Seer database: A database is designed to be a host for storing data. How you filter and disseminated, would determine how you effectively utilize the database. Not having full data content can lead and would lead to misleading information. Targeting certain markets doesn’t muddy the waters, it actually steers conclusions to wanted probable outcomes. Especially with African American women who seems to have a greater risk of reoccurrence. The database can be a useful tool to filter down. Look at my case, as a white woman with no history of breast cancer in her family, active, within BMI, nursed both of her babies for a year each, never smoked or drank; the likelihood of me developing breast cancer at all was less than 5%. And I metastasized right away with an aggressive form of BC. If breast cancer is the second cause of death for women under 50, you would think that capturing and being able to filter my race, geographical, environmental would be useful in help finding a cure or at least making this truly a ‘chronic’ disease like AIDS. Without the study of origin of the AIDS virus, would we have so quickly deduced a control one could argue. As we get older, our cellular division mutating does scientifically makes sense, but with younger and younger MBC patients we are losing, it’s reached beyond an AIDS epidemic.”
But there is so much more. I should have copied some of the answers to her post. The terrible fact is that Metastatic Breast Cancer numbers are incorrect. I have preached on it before and metsters will continue preaching on it after I have left this plain of existence. The numbers are not low in a good way. They are low in a deceiving way.
People diagnosed at an early stage of breast cancer: stage I – III are not included in the metastatic, stage IV numbers. I see that this can cause a lot of issues. I have no idea why early stagers are not counted. This shit kills them too. It isn’t as if they are somehow magical and stage IV is nothing to them.
Approximately 30% of early stage breast cancer survivors become stage IV. Approximately is all I can tell you as the numbers are messed up. I see so many folks who have absolutely no idea what is going on come into my support groups. The questions and the statements are heartbreaking.
“I had no idea this could happen to me.”
“When do you ladies end treatment?”
“I don’t know how I got here.”
“I was cancer-free for 15 years.”
“What is Metastatic Breast Cancer?“
Then, there are the people like Kim and me. Diagnosed de novo. We are the 5%. With only 5% of us counted for studies, it makes sense that I was told this disease is so damned rare.
With stats like this, we often feel ignored. With more research focused on early stage breast cancer, we feel ignored. It isn’t that those studies are not important. They are. We just want to be acknowledged and have *MORE* studies done.
This is why I push Metavivor on my friends for donations every year. Metavivor is an important resource for us Metsters. They fund the research that is needed for Stage IV. They will not be able to save me, but I am hoping they will save future generations.
On August 25, I will have made it another year. Suck it, cancer.
I have no idea what to write about the fourth year. I have survived longer than some, but not as long as others. I have days that are awesome and days that feel awful. The whole 2020 curse isn’t helping that last bit.
I will be celebrating surviving for four years with Herceptin, Taxotere, and a bone strengthener, Zometa. Awesome! I will actually celebrate with some sort of favorite dessert.
Fuck you, cancer
What to write about the fourth year? I feel like everyone in the world has experienced so much along with me. I feel like these could be some of own personal highlights:
Gabapentin tried to kill me at the end of September and again near the beginning of October. It looked as if I had septic shock, but the docs could find no sources of infection. My blood pressure was so low, I had trouble walking and standing. My temperature was up to 103 F.
Navelbine, right after the Gabapentin did not work at all. I called it the bellybutton medicine when I couldn’t recall the name.
A good thing happened. I was accepted to the February 2020 Inheritance of Hope before the big closedown. They took us to Orlando for Disney and Universal. We had support groups for the boys and Gabriel & me. It was an amazing experience and you can read about in a few past post in February.
I met a “healer.” I call her the chicken lady. You should read her post here. There is a lot of crazy to write on this subject.
Around mid-March/April, I started having trouble with scintillating scotoma. Then I had issues with aphasia. The two of them led to scans that led to whole brain radiation. That was really difficult.
The last on the list of highlights would be my heart. The Herceptin has caused it to from about 50% to 40%. I will be doing a future test for that.
I’ve met a lot of new people and I have lost a lot of old and new friends. The year became weird with Covid-19. I wish all of you good health.
Seriously. I have had all types of radiation. Upper thoracic, skull (not brain), sacrum, right shoulder, liver, left eye orbital, right eye orbital, targeted brain tumors. The side effects were rough on all of them, but I was able to work around most of them.
WBR was different. In my previous post, I mentioned what had happened that led to the decision for this treatment. The aphasia happened only once after I started rads. It was during an online doctor meeting for Sam, of course. Couldn’t have been better timing. I was lucky that Gabriel was working at home and not in a meeting of his own. I couldn’t stop saying, “musk-les.” I couldn’t pronounce “muscles.” I was able to choke out a “help” to Gabe. Aphasia is sneaky and frightening.
I still get the scintillating scotoma. Not as often and not always with a headache. At the moment, this is what has been keeping me from driving. I can’t see through those damned shapes.
WBR wore me out, for starters. Mildly at first. I started to look forward to the weekend break to get my stamina up enough to at least do laundry. I had 10 total treatments from May 18 through June 2. By the end, I was a mindless mess, too tired to get out of my chair, help with dishes, or read to my boys.
Radiation treatment will take about two weeks to fully end after the last treatment. Since June 2, I have had awful side effects. I, at least, remembered after the first week to apply liberal amounts of vitamin E to my head. I still have scabbing, but it could have been worse.
But, it did get worse. I had ZERO idea that it could be possible to have the skin around my eyes burn. I knew my eyes might be affected. I was told my vision could change. I have been washing them often, putting in eye drops, and slathering vitamin E on my face (safely). The skin around my eyes is red and has a lot of tiny white peelings. So sexy. To make it even better, my eyes are always weeping and the skin resembles alligator skin.
Then… my right ear popped very audibly and I had fluid and blood come out. Seriously. What. The. Fuck. I won a trip to Urgent Care and a double ear infection.
Probably one of the harder side effects, mentally, wasn’t even from radiation. I had to take a steroid twice a day to help cope with any pain from my brain swelling due to rads. The steroid caused my body to swell up. My abdomen and my face resemble an egg. It wasn’t comfortable and I really didn’t look like myself. I was given a schedule to reduce and get off the steroids. My last dose was June 10. Such a relief.
What these after-effects also led to was less time on social media, not so terrible. I also contacted fewer friends, not so good. I’ve been reading more, which is nice. I have just been more introverted than usual. I have a few friends and family who wrote letters to me before and during my treatment. I need to finish my letters back to them. They were very much appreciated.
The steroid bloating has gone down a lot. I don’t feel nearly so uncomfortable. However, without the steroid to check it, my pain levels have risen. Currently, I am fine with that. I would rather take pain medication every other day or so than to deal with an egg head and body.
My eyes have also cleared up a great deal. I still use eye drops multiple times during the day. I still have scabbing around my head, but it is now more itchy and it is healing.
One side-effect that I am getting under control is no sense of being full. I have been eating more than I usually do. This was strange because I was also unable to taste anything. I the past, this has caused nausea. I am good with having a little weight to lose.
To my metsters about to go through whole brain radiation, moisturize, moisturize, moisturize. Don’t forget your face. Be sure to keep up on your veggies. If you lose your sense of taste, as I did, balsamic vinegar is helpful on a salad or pretty much any vegetable. It is also good on chicken.
My cancer wants to eat my brain. Therefore, cancer is a zombie that I am unable to kill it properly. I can’t even follow all the rules appropriately apart from having a kick-ass partner.
The night of May 8, Gabriel took me to the ER – side note, I have been writing a poem or song about the ER. I felt that was something I need as I spend so much time there. The scintillating scotoma has been going on for a few months. For those of you who are looking this up, my own experiences have normally involved bright objects, sometimes like lightning or lines. Last night involved large rounded shapes.
Scotoma lights can not be seen through. This makes it very difficult to read, look at all of the things my kids show me everyday, and drive. The lightning lines I can work with. The shapes were impossible. I was glad that I was at home when they really hit. I had been running an errand just before. These always lead to headaches. I was told it led to migraines, but they did not feel like migraines to me.
I have been waking up with headaches for the past few months; different from migraines or sinus types. An ache starting at the base of my neck and heading up over my skull. This has been going on since at least March, but maybe longer. It isn’t a pleasant way to start the day.
I am sure that a lot of people are asking, “Why didn’t your oncologist do anything?” The answer is that he has. Dr. C is really on task and doing his best to keep me earth-side. I had first mentioned the lightening lines probably around October or November of 2019. I also talked to my radiation oncologist about it. Dr. J also suffered from scotoma and told me it was caused by stress. I did have three baby zombies making an appearance at that time.
Betweeen the three of us, we decided to allow my current chemo to do its job. And it did. Those zombies were double-tapped and gone with the next scan.
The scintillating scotoma actually did continue. It didn’t show up very often and I could fade it out by using calming techniques: deep breathing and keeping my eyes closed for a minute or two. With four kids and a rather large house, I think I am allowed some stress. These did settle it down, and quickly.
This method worked really well up until about February, when my headaches started. I probably should have discussed it with my cancer team when they were becoming more frequent and annoying. Maybe even insisting on noggin scans. Admittedly, I did not as I thought it was the anxiety about Covid-19 that was causing the lightning and the headaches. I believe Dr. C was thinking the same thing.
These are weird times.
Back to the ER visit.
Last night, I was not only seeing the bright shapes, I was not able to speak properly. My brain was not allowing me to speak the words that I wanted. What popped out was a jumble of nonsense. I heard it come out and I knew it wasn’t right. It took a lot of work for me to say what I wanted to say.
Adding in a large headache to the above symptoms had my husband on the phone with Dr. C. He had me go straight to the ER.
I had a blood draw and a CT scan. The blood looked okay to the ER doc, apart from low hemoglobin. The scan showed a large number of mets had invaded my head. The doctor recommended full brain radiation and had sent that to Dr. C and my General Practitioner.
He told me that what I had been experiencing was probably less scotoma and more seizures. The tumors were probably causing inflammation and swelling in my brain. This would explain the words and the brighter images that have been affecting me.
I will see my oncologist on Tuesday and I will most likely get an appointment to speak with Dr. J about the radiation. In the meantime, I am taking steroids more often to help with the headaches and a seizure medication to help with the lightning. I will post an update after speaking with them.