Is it ok if I rant a bit?

I’m not ok. Should I write when I’m not ok?

I’m feeling confused, tired, vulnerable, insecure, tired, misunderstood, abandoned, forgotten, self-doubting, defensive, unloved. Feeling sorry for myself. Did I say tired? I want a mother and father to dote over me, to treasure and cherish me, to marvel at my fingers and toes.

I feel alone. Like I have to go it alone, carry this load by myself. Be brave. Be strong. I’ve been at this so long people no longer ask how I’m doing. They tell me I look good, that I’m positive or inspirational or something.

The trouble is, I’m not up to it anymore. I’m tired.

Things are going ok, I suppose. There is still the myriad of doctors and testing and scanning and poking and probing. Chemo every 3rd Monday. On Tuesday I have to have yet another surgery to replace the port that was put in my chest in 2012 to facilitate the endless chemo infusions. I don’t remember anything about the original procedure when the port was put in, that’s how out of it I was back then. The port no longer functions so another one will be put in, and threaded up into my jugular vein.

I guess it’s no big deal, but somehow I’m not ok. I have to go under anesthesia again. More cutting on my body. I think it’s the cutting part that is bothering me. I want to curl up into a ball and protect my body. Defend myself. I’m tired of the knives and needles and radioactive rays that are bombarding me. Weekly, it seems.

I want to be swaddled. Carried. Cared for. Protected. Loved.

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Continuing my life on chemo

Chemo is hard. Like carrying a 200 pound pack on your back all the time, fighting through mental fog, being tired all the time even after getting plenty enough sleep. My mornings are the best. As the day wears on I lose momentum even to the point of being able to talk to people. I’m picky with food and have stomach issues. No raw vegetables for at least 2 weeks after getting the drug. Sores in my mouth. Itchiness and rashes. Tingles in my arms and legs that are more like pain than tingles. My liver numbers are high, but considered ok for the strength of the drug that I’m getting. The last week before the next infusion I finally have a glass of wine to celebrate feeling sort of “normal” again.

The Kadcyla seems to be doing something. The markers for cancer that they measure in my blood are dropping dramatically so I don’t want to complain too much. My medical oncologist has already told me that I’m not one of her wimpier patients. But since this drug appears to be part of my long term strategy, I have to learn how to live with it. I asked for a reduction of dosage to 80% strength and the doctor agreed without any fuss. But she told me that I can’t up it again, once it has been reduced. I can’t even consider to go back to my old stand-by drug, Herceptin. Once you “progress” on a drug, they put it away forever.

CA27_29_3_2016CEA

Next month I will have another brain MRI. Since that is the only place where my body shows a definite progression of cancer, I am hoping that the Kadcyla makes a significant difference there. So far, I feel ok in my head. The last brain MRI (Jan., 2016) showed a resolution of most of the cancerous lesions but some brain damage from the radiation used to zap them.) I have strange passing headaches (if I can call them that, it’s not bad) on the right side only of my head. And I have ongoing dizzy-ness issues that I think are mostly due to my strange hearing/ear problems. I take prophylactic anti-seizure medicine and have never had a seizure. I think I’m still “thinking” ok.

Other than that, I’m finding my way through this journey. Learning how to navigate the various emotional tangles: sometimes I feel sad, a lot of the time I’m frustrated (especially with the fatigue), usually I’m ok, and at certain rare instances I’m actually enthralled with the adventure. Joyful, even. I am growing stronger and in new ways. I am deepening. Hopefully learning to be more honest and authentic with myself and with others. I hate wearing a mask. I am (very slowly) learning how to share this with others, without getting annoyed or caught up in their fears, needs or projections.  I don’t feel so afraid anymore, like I did when this whole chapter of my life started. Although the unknown of brain issues can still unnerve me if I dwell on it.

I hope that I’m learning to be quiet more, listen more, live from my own hope for all of us, right here, right now.

dropping like a rock

My cancer marker numbers continue to fall. Dramatically.

CEA_2CA27_29

Kadcyla seems to be the drug for me.

The side effects are challenging. Fatigue and headaches, mainly. Some of my other blood tests are out of range – the liver function tests, platelets. Am I robbing Peter to pay Paul?

Round #4 is Monday. I put it off a few days this time because friends had invited us to a plane ride across the Everglades, something I’ve always wanted to do. It’s time to arrange chemo around my life, rather than arranging my life around chemo.

 

Good news!

What a difference getting good reports makes.

First, my cancer markers are going down. Cancer markers measure something in the blood that, in some people, can reflect active cancer in the body. Mostly doctors don’t look at the actual number, but the trend: are they going up? are they steady? are they going down? My oncologist regularly checks the CEA (a general cancer marker) and the CA 27-29 (a breast cancer marker). Both have been gradually rising for the last 6 months in me. Look at what is happening after I started the Kadcyla. Going down!

ca27cea

The 2nd good news is that the MRI last week shows that my brain is stable now. That doesn’t mean that there are no lesions, but it does mean that what they see there is not growing and nothing new is showing up. I haven’t seen the actual report, only what the doctor told me on the phone.

So I am crawling out of my hole of “worry” and joining the living again. Yeah!

My next round (round #3) of Kadcyla is on Thursday. I’m doing yoga, eating well, going to the gym and pool, walking, everything I can to keep the side effects at bay. I think I can do this and squeeze out a good life too.

 

No news is good news

Even though I don’t really have any news, I thought I would give a recounting of how things are going.

Round #2 of Kadcyla, while still no piece of cake, was much easier than the first round. My biggest complaint is fatigue and a vague head ache. I’m always ready to “lay down for a bit”. But I’ve started a new exercise routine at a local gym/pool/physical therapy place. I’ve been using this place, off and on, since my hip fractured 3 1/2 years ago. A warm pool and a hot tub that can rival any deep tissue massage therapist. It’s more like going to a spa than going to the gym. I’ve added some weight machines to hopefully strengthen my hip and leg muscles.

I still don’t know whether or not the Kadcyla is “working”. For some reason they didn’t check the cancer markers when blood was taken on New Years Eve. I saw my oncologist, Dr. McKeen, this morning and she had blood taken again. Said that the results would be up tomorrow. Otherwise, though my liver and platelets take a good hit when I get the Kadcyla, so far they are recovering enough to be ready for the next infusion in 3 weeks time (just about the time I’m not feeling so tired!).

Dr. McKeen had also been in touch with a doctor at Stanford who had worked with the original research that resulted in the miracle of Herceptin for HER2+ cancer. This doctor told her that they were seeing good results from Kadcyla on brain mets and it was a good choice for me. I don’t know if this means that Kadcyla works for people who have not yet had brain mets, or those that have already have them. I tend to think that since my spread has already established itself in my brain, I might not get as much benefit. But I do appreciate the way that Dr. McKeen is reaching out to the top researchers in the country to find a solution for me.

She spent a lot of time talking to me this morning, about everything from books to how I felt about things. She told me about a patient who had died from a brain met after their original cancer had been cured. I was a little surprised at her bluntness, but I appreciated it. It helps me to trust her more. Dr. McKeen never seems alarmed and is very positive and hopeful, but I can trust that she will tell me the truth.

I will have a brain MRI on Friday. I told Dr. McKeen that, no matter what, I was not interested in Whole Brain Radiation. This is a very effective way of managing brain cancer that has spread more than localized radiation (gamma knife) can handle. It is usually given to people who already have significant cancer load somewhere else in the body and stops the brain cancer in its tracks. WBR essentially “sterilizes” the brain cells. The probability of dementia occurring within a couple of years is high (most don’t live that long). Since my cancer is well controlled from the neck down, I could live a long time. I’m not interested in living for years and years just for the sake of being alive. I wouldn’t do that to my husband (nor do I have any interest in it for myself). I’m very clear about this. Dr. McKeen commented that they’re not doing WBR much anymore.

Otherwise, though being a little down and sad, I’m also feeling ok. Strangely hopeful and happy. As if whatever this journey is all about, I’m being opened up to a better way of being. It’s not really as gruesome as it can sound.

 

being sick. Kadcyla #1

It’s not easy for me to be sick. To deliberately put directly into your blood stream a drug that will kill cells. Believe it or not, I do not have a lot of experience with “sickness” in my life. I don’t get a lot of colds or other common illnesses.

At first I thought I would be ok. I was a little dizzy and tired, but had no obvious “reaction” to the infusion. They watched me for 90 extra minutes just to be sure before they let me go home.

Then the headache started, then the nausea, then the chills, and always the overwhelming fatigue. I think I was only taking at most 2 breaths per minute. I didn’t have the energy for any more. As usual, I tried to deny it, tried to fake my way through saying “I can do this” to myself. Ultimately, though, I had to surrender. Just crawl into my bed and stay there.

I felt sorry for myself. I worried that I would never come out of it, and this was the rest of my life. I told John that if this was what I had to do to stay alive, I didn’t want to do it.

Now it is Monday morning and the curtain at the window has once again opened. I’m not totally back to myself, but I am better.

My blood cell counts are a little off. I have to have them checked again on Thursday. Thank God these Kadcyla infusions are only scheduled for every 3 weeks. I hope that they are helping. Next one is New Year’s Eve.

Hoping to be a Super-Responder!

Thinking out loud …

I will be starting Kadcyla on Thursday. This is my first major change of drug in 3 years. I’ve had different drugs added, then dropped, but Herceptin has been my major maintenance drug since chemotherapy with Taxol ended in January 2013. Kadcyla is a cancer medicine that combines Herceptin with chemotherapy in a single treatment. This type of treatment is called an ‘antibody-drug conjugate’.

I have HER2+++ disease, which means that my breast cancer cells have too many little HER2 tags on them. +++ means that I have a lot of those tags.

HER2 cell

Herceptin has worked for me because it targets those HER2+++ cells and tells my immune system that they are not good. This is “targeted therapy”. Then my immune system gets rid of them. It has worked well for me. My scans from neck down look “clean”. The lesions that were rampant in my bones in 2012 appear to have healed.

However Herceptin does not cross the Blood Brain Barrier, so my brain has been vulnerable. Lesions – little growths of HER2 cells – have been intermittently showing up in my brain, 8 last October. There aren’t any good drugs yet for treating or preventing these brain lesions, only radiation.

My doctor has been letting me take the lead and make the decisions regarding how I am treated. We both know that my disease cannot be cured, so we’re not really trying to save my life. Quality of life is important to me. I don’t want to be kept alive just to be kept alive. She knows this and I know it. Sometimes the treatment for cancer can do more harm than the cancer itself. It’s a delicate dance.

I’m not taking this step lightly.

Strong chemo drugs do a number on one’s immune system, and I’m relying on my immune system to keep the cancer at bay.

What worries me are the brain lesions.

My cancer markers, which can indicate the level of cancer-load one is fighting, have been rising since July. In 3 years, I have never seen them do this. After chemo in 2012-2013 they dropped and stayed low. Now they are almost as high as they were before the 2012 chemo when my immune system became so overloaded that it broke down; I was hospitalized twice with infection and fever.

There is no evidence the Kadcyla will cross the blood brain barrier. But it does fight HER2 cancer more effectively than Herceptin. It not only targets the cell and marks it for the immune system, it also releases chemotherapy inside the cell and causes the cell to die.

kadcyla

http://www.kadcyla.com/about/how-it-works

I’m hoping that the Kadcyla will decrease my overall cancer load so that my brain is less vulnerable. There is no guarantee that this will happen.

There are people out there who are called Kadcyla “super-responders”. After a round (12 infusions) of Kadcyla, they appear to have no evidence of disease anymore.

I’m hoping to be a super responder.

The side effects are not great. I’m deliberately not reading them because I know that sometimes the idea of a side effect will give it to me.

I’ve gotten some good ideas from others who have taken Kadcyla to minimize side effects. Like eating fresh pineapple and papaya (for low platelets), taking brisk 15 minute walks every day, fresh red meat, like veal liver (for low red cell counts), dark greens, like collards (my favorite, and in great abundance this time of year in Florida), swimming (!) for muscle and bone aches. Naps.

I’ll continue to post my way through the Kadcyla treatments.

I’m planning a European trek for the Spring and need to be in shape.