It has been about four months since I was given the metastatic breast cancer in the brain diagnosis. It has certainly been one of the most intense times of my life. I finished my rounds of whole brain radiation which worked well, onto the radio surgery radiation which meant 5 targeted radiation therapies on the shrunken tumor. I only got through four of them. By the time for the last one I was back in the hospital with headaches, vomiting, nausea and now seizures. My head pain was always there, it just wouldn’t leave. One of my neurologists (thats right I have a bunch of ’em) was convinced that the pressure built up in my brain was causing the headaches and therefore the seizures as well. The decision to put a shunt into my brain to release the pressure was made. I have a 3 chamber box in my head now with a tube that runs out of the box, down my neck and into my stomach. All of this is under my skin but you can see it if you’re looking for it. This shunt has been the best! I woke up from that surgery aware, talking, no dizziness, no headache for the first time in a long time. It was great.
In addition to the full blown seizures I would have falling episodes. Some I could tell were coming, and some I had no idea. One minute I’d be standing talking to the nurse the next minute I’d be half on top of her having fallen into her. I remember thinking, how am I ever gonna get up from here? The seizures I don’t remember at all. All I know is that I woke up to a room full of Dr.s and a terrified looking husband. Oh yeah, and I was wet. Thats right apparently we have entered the humiliating stage of cancer knocking out your control of bodily functions. So far thats as as bad as it has gotten thankfully. Not sure I’ll ever mention that again!
At this point Ed is thinking we are not going to Paris. This is bad. Well we made it, Paris was great. Riley and I had great birthdays there and dinner at the Eiffel Tower was awesome. I had to bring a “rollater” with me. Not sure if I talked about it before or not. Basically its a walker with a seat. I’m not ready for a wheelchair thats for sure and a walker is ok but because of the falling I needed a place to sit. So it turns out the rollater was a blessing and a curse, mostly a curse. There is a lot of cobblestone in Paris. It was very difficult to push. Also going from not much physical activity to so much walking hunched over the rollater was a big leap. Today is 10 days since we have been home and my upper back, shoulders and rotator cuffs are virtually unusable. I mean I really can’t use my arms almost at all. Ed has to help me get dressed in the morning. I can barely brush my teeth and put face lotion on. He has to get things adjusted so I can reach them. The kids are getting things in and out of the fridge for me. I couldn’t even fold the laundry yesterday with my arms like this. It seems to be getting worse instead of better. My grip is getting weaker and my fingertips are numb in both hands, my handwriting is awful. The Physical Therapist is coming twice a week and I’m doing the exercises but the pain is terrible.
The question now is is this just muscular, like I have been saying or does it have to do with the tumor? Ed is of the its the tumor camp. I admit I’m getting worried he may be right. I was convinced that by this far out from the trip my arms would be back to normal and the pain wold no longer be keeping me up at night. The thing that made me most worried was when the PT said I should call and talk to my oncologist about it. She thinks its muscular but since it doesn’t appear to be getting better maybe she’s worried too.
Its getting harder to keep a positive attitude when the pain is constant and my ability to be self sufficient seems to be be rapidly fading. I’ve been crying a lot. I think Charlie notices the most. He’s been very cuddly and super helpful always asking what he can bring me, getting me drinks, helping me put a sweater on, warming up a heat pack in the microwave. He’s been great!
Our next goal is Eddie’s Nascar trip in Dover, Delaware on June 1st! Lego land (FLA) is tacked on too because we had intended on going to the Daytona 500 earlier in the year but it didn’t work out.
Thanks for reading/listening. I think it helps to get it out.
I think metastatic is the scariest word in the English language to a cancer patient/ surivor.
Tonight is marks my one week stay here at MGH. I was really Hoping to have gone home today but it wasn’t meant to be. A lot of this post will be repetitive if you have been reading Ed’s care page updates, but this is my view and that is his. Though they are surely similar. Please forgive my typing, I’m on the iPad which isn’t great for typing and my coordination on my left side is bad so it’s hard for me to control my fingers on that side.
Let’s start back to shortly after Christmas when I started noticing that my left side of my body wAs becoming oddly hard to control. My arm and hand twitch, my left knee buckles. Weird. Then I started noticing I was slurring my words and my tongue felt really thick and hard to manipulate. Soon I started having headaches and dizziness. I made an appointment with my primary care dr for January 8th. After googling and web md I figured she was going to tell me I had a mild stroke. That’s what she was thinking and she sent me for an MRI. She made sure to tell me she didn’t think this was related to my cancer. Well obviously it isn’t cancer I thought, it’s a stroke. I saw the oncologist dec. 17 and was given a clean bill of health, told to live my life! No more scans or blood work only a symptom check in 6 months.
I ended up having a CT scan, they couldn’t do the MRI because I still has in the breast tissue expanders which have magnets in them. I spoke with my Dr. Over the phone and she said its time for the ER, what they see isn’t consistent with stroke, it’s a mass, a growth. I hung up and started to leave the room but there was a nurse there and I just lost it. Sobbing, hyperventilating scared, I fucking have brain cancer. I never saw it coming. It’s very unusual for breast cancer to spread to the brain first, that’s why they didn’t scan it. Usually it’s liver, bones, lungs, ovaries. Places I thought well if it goes there I can get them removed and have more chemo and the battle will go on for years and it will be a type of disease to be managed. But in my brain?! That seems hopeless, like a death sentence. So that was my Wednesday. Thursday and Friday are a blur of appointments and meetings with Drs.
I need to get my exchange surgery moved from the end of January to ASAP. I need an MRI so they can see the tumor more clearly and see what it’s touching or not. Monday I am scheduled first patient, the exchange goes well, I barely feel a thing since they used the mastectomy scar line. They get me an MRI a couple hours after I’m out of the operation and we meet with the radiologist.
It is decided that the tumor is too large and close to my brain stem to operate on. I may also have something called LM, a really long bad word that I can’t type. It means the cancer may be all thru-out the lining of my brain. Chemo can’t get into your brain by the way. The test to determine it is a spinal tap but they can’t do one because it would suck the tumor down into the cerebellum and kill me. So we aren’t gonna do that! Whole brain radiation it is.
Tuesday I go for my first treatment. They need your head to stay very still. The marks are more precise than radiation for the breast were. They make me my own mask which clips around your head to the table so you can’t move at all. When they first made it I was ok with it but I have been on huge steroid doses and my face is so swollen it’s really getting tight on me now. I’ve been told I’ll lose my hair… Again. So much for growing out this awkward growing back stage hair. What a waste of money that last cut and color was!
I had a really bad reaction, vomiting , dizzy , headache. Ed rushed me into the ER, I could barely open my eyes. Apparently at first radiation can make things swell before they contract so my brain felt like it was exploding. They are trying to make it shrink by giving me massive salt in my IV and salt pills to take and I can’t just drink, the nurses count and monitor to make sure I’m not rehydrating. I don’t like it.
So for now I’m stuck here until the neurosurgeon and radiologist agree its safe and stable enough for me to go home and come in daily for my treatments. The idea is that these treatments will buy me enough time to take a trip with each of my kids, one on one. Something special to always remember. Anything after this summer I think will be a gift.
There are lots of statistics out there but I don’t fit those molds so well. There are also miracles. There is always hope. The truth is I’m so mad about all of the things I am going to miss. The list is huge. Mostly I want normal life for my family. I want to be home everyday they get off the bus. I want to see the plays and games and meets. I want to see what kind of people they are going to become. How can I make sure they are happy if I’m not here? I’m not ok with this, I’m really not. 13 days isn’t enough time to process this. I feel so guilty too. I have the easy part, I will be gone. My heart breaks for the sadness I know Ed and the kids will face, just as I would if it were him.
Ed has promised to get the rocking chairs early so we can start using them.
Yesterday was the one year mark of when I was told “it’s cancer”. I feel a mix of happiness, sadness, relief and gratitude. The first thing Ed and I did last year was go for a long walk in the woods. We marked the day by taking that same walk again yesterday.
I realize I have not written a post since my last chemo back in May. I think I was trying really hard to get some normalcy back into my life and sort of ignore cancer. Here is a recap of whats has happened.
After chemo the first thing I did was get my port removed. I really came to hate that thing. The surgery was easy. So easy in fact that they did it in the hallway outside the operating rooms. I kid you not. The nurse led me back down the hallway outside the operating theaters. I was brought to a gurney with one of those curtains that pulls around it and told to undress from the waist up. I put on the lovely hospital gown and sat on the side of the bed. When the nurse returned I was told to lay down. I said I could walk to the room and was surprised when he said they would be doing it here. What? Here? Yes. The doctor arrived, introduced herself and said this isn’t called “Mass” General for nothing. She numbed up the site, slit open my scar and with some trouble, because of the poor hallway lighting, pulled the port out. Did I want to keep it? Um, no.
Mid June I started radiation treatment. I went to the hospital everyday Monday thru Friday. Radiation seemed like a piece of cake compared to chemo. It makes you tired, your skin burns and blisters and itches, but 38 treatments later I still say its easier.
Our family enjoyed a few weeks in Maine with no doctors appointments, no needle sticks, no nothin! It was great! The kids started school again and life seems to be getting back to normal. I went for my 3 month CT scans and everything looks good. I have to see an endocrinologist because of the nodules on my thyroid, and there are some suspicious spots on my lungs. The lung spots they think are probably “just” radiation damage and I have been told not to worry about them. Ironic that what cures one thing may give you another cancer later down the road. It’s a good trade, I’ll take it.
I could not have made it thru this year without the support of so many people. Those of you who have been following my husband’s posts on the care pages site know how incredibly amazing he has been. I would have been a total disaster without him. So many people cooked meals, sent flowers, cards and gifts. Others babysat the kids or helped get them to their various activities. Some of you even helped us move! Big or small, I am so grateful for all of the help and the prayers that came our way.
Thank you, thank you, thank you.
I did it, it’s over! I made it thru my last chemo today. While I do have the next 5 days of feeling crappy to look forward to, I really don’t care right now. I feel like I have truly made it half way thru my treatment. 12 chemos, check, bilateral mastectomy, check, 4 more chemos, check. Done and done and done!!
So whats next you ask? Well reconstructive surgery is on the horizon. As of this moment it could happen as soon as Tuesday, or as late as June 11th. We should have a definitive answer tomorrow. It depends on factors like my blood counts and crazy insurance complications.
After that I will begin radiation. I feel like after all of this that will be the easy part. I hope I’m not being naive, lets just call it optimistic! Radiation will be every day for six weeks. Hopefully it can be done at the closer hospital without me needing to drive into Boston every day. The plan is to have it done at Newton Wellesley, but if they can’t use the photon machine because of certain angles and other reasons I won’t get into, the back up plan is to go to MGH and use the proton machine. Cool right?
The long and short of it is that I could be done with everything by mid to late July! All the dates will firm up by the end of the month but I think I really do see the light at the end of this nightmare tunnel. By the time October rolls around, the month I found my lump, I should have some hair, some stamina and a new outlook on life. My year of cancer hell will be coming to a close. I will make the transition to survivor. Survivor seems passive. I intend to be very active, a survivalist perhaps, constantly trying to outwit potential tumors. I don’t feel like I will ever be cured. There can always be that one cell lurking ready to make trouble again. I am currently reading books about nutrition and the important role diet plays in cancer. My mission will be to try to make my body as inhospitable as possible to these cells.
I had a hard time at the visit with my oncologist today. He is cutting me loose until September. I feel like he’s saying, “I have done all I can for you. We have given you everything we have at our disposal. A healthy diet and exercise ( oh yeah and get your ovaries out) are the best things you can do. Its time to go live again.” Those are scary words. Great, but scary.
I do have so much living to do. Slowly but surely I will reclaim my life and all the things I love to do.
I’m like the honey badger: cancer, I don’t care.
Spring seems like it has finally begun to take hold here in Massachusetts. What an amazing difference on your outlook a little sunshine and warmth makes. Last week I started AC. Wow does it suck. I got to see my nurse Meg again which was great! The infusion time was much shorter than the taxol/cisplatin and the infusions are every other week instead of every week but that’s where the good stuff ends.
The A in the AC is for Adriamycin doxorubicin, aka, the red devil. The infusion itself was not bad and we passed the time with our new obsession Downton Abbey. Sometimes its good to catch on late to these things. About an hour after we got home I began feeling the effects and took to my bed where I stayed for the remainder of the week. It was a slow, awful week with nausea, dizziness, headaches and fatigue. On Thursday Ed had to force me out of bed so I could go back to the hospital for a shot called Neulasta. I had a makeshift bed in the back seat of the car. It really is like salt in the wound when all you want is to be left alone with your misery but you have to go back the hospital for more pain inducing drugs. The AC suppresses your white blood cell production and thus you are more prone to infection yada, yada so they give you Neulasta which forces your bones to produce more white blood cells. So now you’ve added in some bone pain to the mix. Back to bed.
I have to say this was a very hard week. I really could not get out of bed and I couldn’t eat. Mentally I went to a dark place filled with thoughts about dying and not making it thru all of this. Thinking about my children growing up without me. I mean I know any of us could get hit by a bus tomorrow right, but it seemed like there was actually a bus with my name on it. I read a post on another blog that linked to a blog set up by a husband who lost his wife to breast cancer. It is his photo journal of their experience. I knew I shouldn’t have looked. This was exactly the wrong thing to do. I knew I shouldn’t have looked but I was in that gloomy self-punishing mode so I clicked the link. I still get tears thinking about the pictures now. There are two pictures in particular that kill me. One picture is his wife in a hospital bed set up in their living room next to the couch. She is in the bed sleeping and the couch next to it is rumpled and obviously made up for him so he can sleep next to her. The next picture is of the empty bed with neatly folded sheets and blankets on the end of it. The couch is back to just being a couch. It’s over and she is simply gone. The battle we didn’t choose is the name of site, (http://mywifesfightwithbreastcancer.com/) but seriously don’t look unless you are ready to cry.
I am incredibly happy to say that Saturday morning came and I was able to get up and actually have a day. The meds that are supposed to help with nausea etc were finally helping. Sunday was a good day too and the week has continued to get better. I have banished all the dark and gloomy from my brain. I have high hopes for next week too. Now that I know I get a week in between treatments to recover, it will be easier to stay positive. Today was so nice and we were feeling so good we went to the new frozen yogurt place in town. I know, but trust me in a town this small, i.e. one traffic light, it is a big deal 🙂
80/20. Those sound like good odds. I’ll take that right? So why do I feel like I got punched in the stomach and there is no air to breathe? These are the odds my oncologist told me my chances are of beating this. He said he was sorry that the chemo I have completed didn’t do a better job. Some of his patients showed no evidence of cancer after the 12 weeks. My response seems to fall somewhere on the low side of average. Somehow after the initial shock of the diagnosis wore off and we got to the work of fighting back, I came to believe that since I was doing everything we could that of course the only possible result would be a total, undeniable cure. It seems I have fooled myself. Today I am only 80% sure instead of the 100% I felt last week.
The conversation has changed. It is not about just what we can do to get rid of the cancer anymore. It has shifted to the questions and thoughts no one wants to talk about. Now that we have evidence that the chemo hurt the cancer but didn’t annihilate it we talk about whats next. Because of the clinical trial I have already had more chemo than most. How will we know if the next round of chemo will be any better. Will radiation be the cancers downfall? The scary answer is that they don’t really know. I will have a scan to see if anything shows up but just one cell is all it takes to start trouble. Then there is nothing to do but wait and see if I have any symptoms. Great plan huh? We all know that by the time you have symptoms of anything it will be really bad.
Since I have no breasts anymore I can’t have cancer there. A common place for breast cancer to metastasize to is the lungs. Then it doesn’t matter anymore. Early detection or late makes no difference, there is no cure, it becomes about symptom management and trying to push off the inevitable. It may be getting ahead of ourselves but this is the kind of conversation that 80/20 gives you. If Triple negative breast cancer reoccurs it is typically within 2-3 years. If you make it 5 years out you’re golden.
When does one make a bucket list?
It is 11 days since my surgery and I feel like a fog is lifting. I feel as if some type of normal is coming back. Maybe its because I just loaded the dishwasher and wiped down the counters for the first time in a long while. This wasn’t exactly easy as I have very limited arm movement. I couldn’t reach all the way to the back. My arms get tired easily since they haven’t been used much.
When I first woke up from surgery the thing that hurt me the most was my right elbow. Apparently they put my arms in some wacky position for 6 hours and its like the nerve gets way too stretched out and just gives up. It didn’t like that. The backs of my arms are still not right. It feels like I had surgery on them. I would not be surprised to find stitches up the back of my arms. They feel cold and tingly like they are almost asleep.
I had 4 drains after surgery but I saw the Dr. this week and she took out 2. I have one on each side. I have to measure how much they put out everyday so I can hopefully get them removed next week. They make it hard to shower and dress. I have a handy pouch for them, but life will be better when they are out. I can only sleep on my back when they are in, and I’m a side sleeper. Nonetheless, I manage to sleep a lot. Mostly I am sore, very sore. Some of my ribs feel like they were hit with a bat. Thank God for the painkillers.
The surgery seems to have been successful in that all of my breast tissue was removed; the sentinel lymph node from my left side was removed and all of the lymph nodes from the right. We have yet to get the pathology report back for anything. The not so happy part is that they didn’t do the reconstruction. I was hoping that reconstruction would be done at this time so that I could avoid another surgery. The surgeon felt that the blood flow to some of the tissue was not good enough. She didn’t want to risk complications of some of the tissue dying and said that I will get a better result by waiting. So now I have spacers. Spacers, tissue expanders, are in place and need to be gradually filled and then replaced by implants. I really didn’t want this. I wanted to be healing, on my way to less pain and getting better. Now I feel like this is only temporary since they have to open me up again.
Every Dr. and nurse who has seen my incisions say how great they look. Clearly they see something different than what I see. I see and feel lumps and bumps, bruising and swelling and rough, angry stitches. Along with my no hair and my eyebrows that now look like smudges of ash, it is hard to take some times. It’s no wonder I don’t bother to get out of my pajamas.
It feels like everything is on hold while I am recovering. Sometimes healing is the harder part. The waiting to do something can be awful. It gives you too much time to think. Ed and I both felt so good after the surgery because we were thru it. Forward progress, even though it didn’t go as planned. The next step is chemo again. A new batch of drugs to catch any rogue cells and beat them down. Reconstruction before or after radiation is the only thing undecided at this point.