Close to Home

Today was Cycle #5, Week 2. As I waited in the waiting room between the blood draw and infusion, there was a bit of a commotion at the front desk. And older woman with a strong Caribbean accent was screaming at the nice woman who was manning the desk today. "Talk to my daughter! Talk to my daughter!" Requests for her to wait until the reception person had finished entering something into the computer made no difference. The screaming continued. Her doctor came out and tried to calm her, explaining that the protocol was that a patient always needed to show ID to register. "Talk to my daughter! Talk to my daughter!" pushing the phone to Dr C. And Dr. C did talk to the daughter, but then this woman began to slump backwards like she was going to faint. Another staff member brought a wheelchair. And this person noticed that there was a license in the woman's wallet. Seventeen questions later and the patient handed over the license. She was registered and headed to the doctor's waiting room, but refused the wheelchair. She wanted to walk.

About 10 minutes later I heard her voice. "No, No" and then a primal scream. And I began to cry. She had collapsed. The intercom system confirmed what I had heard "Code Blue, Code Blue. Patient Response Team. Gawky 9. Waiting Room." White coats descended from my the infusion room, from the other floors, and Dr. C could be heard directing the response.

That is our reality. At any moment, that woman could be us. There will come a day when I am tired, or dehydrated, or sick, or responding poorly to treatment, and we will be the person on the floor needing the response team.

The fact that this woman was not a nice person doesn't change any of that.

I wept for this woman's moment of weakness and for all of us who will be that woman at some point in the future.

Romper Picture

Another romper picture. Hanging out in the garden after picking some raspberries.

Romper

I should post a picture of a romper. If this is what is going to fill my time, then pictures are almost required.

My cutie in a romper I made for her. This was the second of four.

Cycle 5

Yea, I know. I haven't been good about updating this blog. I don't actually think anyone is reading it though, so at least no one is disappointed in me.

The thing about chemo for life is chemo for life. As with anything, a routine develops. This is what I do on Tuesdays. I go to the hospital. They draw blood. Every fourth week I see the doctor. And then, I sit in a chair and they pump stuff in to me. Some weeks everything is running late. Other weeks everything runs like clockwork.

The other parts of my life have had highs and lows. All of my clients have now transitioned to other developers. They are each happy with the choice that they made. I am still available to assist if needed, but I am no longer a professional developer. I am no longer a professional anything.

This transition has been emotionally hard. In fact, for a bit I tried to cling to that me but I have changed. The Taxol makes me a little anxious, an anxiety that is triggered by clients needing something, guests being irritating, and any deadline, self-imposed or not. It is time to stop. I have made the right decision. And yet, I still didn't send out those final bills. And didn't send them out. And was anxious about not having sent them out. Today, they went. Final Invoice. Done.

My doctor is smartly concerned about the toxicity of Taxol and the effects it is having on my body. She was not interested in continuing this drug if it weren't working, so last week I was rolled into a tube for a PET scan. Cool new machine! Still have to fast for 8 hours before the scan, and they still fill me with radioactive waste an hour before the tube, but the time in the tube is now only 12 minutes! Twelve minutes. My first PET lasted 45 endlessly-long minutes.

Dr. C called me that same day with the results. Improvement. Most of the tumors were stable, but the ones that can make real trouble with my spine are all reduced. This set up the beginning of Cycle #5. Did that yesterday.

So how to fill all the hours in my week? Of course, there are the AirBNB turnovers, making of breakfast items, and chatting with the guests. Two days a week are Olivia time. But that still a fair amount of time to fill.

I have been sewing. So far, four rompers and a dress for Olivia, and one almost done dress for me. I have very few bits of clothing that I can wear and have the port accessed, so I am making one. This is not rocket science, and my mind will probably go to mush, but at least I have something filling my time that improves our lives.

No Benadryl!

Today I began Cycle 3. Arrive at Dana Farber for a 6:50AM appointment for a blood draw, but wasn't taken back until 7:25. My "person" was really, really odd. He wasn't yet prepared. He was scattered. He didn't have gloves. He didn't have my tubes ready. He was a mess. Up to the 9th floor to see Dr. Christina. She wasn't on time either, but not too bad. She has a new PA, and for the life of me, I can't remember her name. There was no reason to see Dr. C particularly. I have nothing to report, and yet we managed to touch on a number of things that were important.

And then to treatment. I got Katy today! My original primary nurse who I do like an awful lot. She brought up the pre-meds stating that I would have a tiny bit of the benadryl. I countered that I thought we were going to nothing today, and she did not disagree. So today, I successfully received Taxol with NO benadryl. Oh what a relief! No sleeping. No fuzziness! And the most important thing? No allergic reaction. Since we finished with an Xgeva shot, I did get that headache, but it is so much better!

So, I think I can do this Taxol thing with only the pepcid. This might just be a good thing.

Oh, and the tumor markers are way down! 20%!!!!!

Seven Years

Seven years ago, today, Dr. Roger informed me that my PET scan indicated that I had tumors outside the breast. I was a metastatic breast cancer patient. I remember so vividly the impact of that statement. I was one of them! In fact, my worst nightmare had come true. I went from being an early stage, low grade, no node patient to everyone's worst nightmare– an early stage, low grade, no node patient who progressed!

The average life span for a woman with metastatic breast cancer from the moment that the tumors are found is 2.5 years. Today, I pass the seven year mark. This is a startling statistic. But mine were found really early. Earlier than normal, so I now have seven years... I am an outlier.

Today I reflected on the life I have had during these seven years. So much life has been lived. So much life has entered mine.

I am in the process of giving up my professional life, which has been a big part of my self-identity. Collateral damage, just like playing the violin. Cancer takes the things that you love bit by bit.

It is a choice, however. How do you want to live once you know living will be in short supply? I have decided to celebrate everything that I have been given. A life well lived. Wallowing in self-pity wouldn't give me any joy, and I believe heartily in joy!

Cycle 2

This week, we began cycle 2. Almost routine now. Head to the 9th floor, vital signs, access the port for blood work, take a walk, come back for the main event.

I decided not to have the decadron/steroids with this infusion. It was up to me which pre-med to drop first, and since I am still a bit concerned about an allergic reaction, opted for the steroid. Boy does the lack of a steroid change the experience. BOOM! Fast asleep. They had to wake me up for the Taxol safety check! I then slept through the hour infusion. Got home, and was back in bed within moments. I am having to work a bit harder to control the nausea. Without the steroids, the side effects of Benadryl are more obvious including a certain amount of drowsiness the next day. Next week we will start to reduce the Benadryl. First by half; and then none. Shall see how that goes!

On Thursday it was time to shave. That salon was filled with women in their 20's getting their hair colored, sheaves of tin foil surrounding their crowns. As my hair fell to the floor, they stared at their phones and traded silly stories with their stylist. So different than last time when the room was filled with women who "felt" what I was going through. This time no hugs, no best wishes, no acknowledgement. I guess I just look older and "this is what happens to old people."

Once again, I am surprised by how cold my head is. Doesn't help that it is damp and cold and rainy right now. Weather is allowed to get warmer anytime!

Once again, HAIR

It is falling out. In clumps. This sucks......

Why does this bother me? I knew this was coming. But, this time it is forever. That is different, isn't it?

Tingles

One of my "truths," one that I say out loud often, "Every drug has a price." Certainly, Taxol is no exception. There are the whole digestive ones which are simply too tedious to discuss. And then there are tingles that have finally begun. Experience tells me that this is the beginning of the head hair tufting. This morning a few more hairs found their way into the sink. Soon, the shedding will be too obvious to ignore.

The question that remains is, will I be one of the few who only get thinning, or will this be full, lint-roller, loose every hair loss?

Tax0l Nº 3 is a Wrap

I have a primary infusion nurse and s/he is, drumroll please, Nurse Kristina who was my nurse on week Nº 1. She is efficient, pleasant, listens well, doesn't hover, and yet checks in regularly. Again, I was given a dark interior room but heck, once that Benadryl hits I am asleep anyhow! This week the egg salad had too much mayonnaise. I need to bring my own food I think. Maybe enough to share.

It is interesting that in the last 10 years, my life has been filled with people with names derived from Christ. My oncologist, a close friend, several nurses, new friends, they all seem to have arrived into my life post-cancer. I don't recall knowing anyone with a derivative name before that.

I was told yesterday, that it will be possible to omit the steroid and benadryl as we go forward. Really? I just need to decide which one goes away first. And then, I can drive myself!!! No benadryl == driving. How great will that be? Mr. L can have his Tuesdays back to work, and I can go to the hospital and only worry about me.

Next week is my week off. I will use Tuesday to drive down to IKEA and restock some of my AirBNB supplies.

Week 2 is just about done

Week 2 has been a bit more difficult. My brain is still working but sometimes my body simply doesn't respond. Or my brain works, but bounces around more than I like. I am dropping items more regularly, but I think it is because I get distracted; not from neuropathy. Food is getting more complicated. My digestive system is getting more sensitive.

A household bet has been won. The answer is in! I have run out of shampoo before I have lost my hair. Seems silly to start a new bottle of shampoo right now, but I can't not wash my hair for the next week, or more.

Silly things that we find amusing. After all, my sense of humor isn't affected by chemo!

I will meet my new primary infusion nurse tomorrow. I am optimistic if for no reason other than, I need to maintain that optimism. But before then, I have a few more hours to play with Olivia, dinner with my kid, and finish setting up the AirBNB space.

I am not quite ready to stop moving.

Nurse Karen in the Rearview Mirror

The phone has been ringing off the hook this morning. I sent this message to my doctor's assistant around 8AM this morning.

= = = =

Good morning P.,

As you can see from my records, I have now had two Taxol infusions. I am rather surprised by how well I am tolerating this treatment. I will give Dr. C the details when I see her on Tuesday.

However, I do have some concerns about the infusion process and who will be administering the drugs. My primary infusion nurse is Katy but Katy doesn't work early mornings. This has placed me into what I am calling "Nurse Roulette." I have had two different nurses and this is not tenable. I can't re-educate nurse after nurse after nurse on the specifics of my body; listen to lectures about Taxol week after week; I just don't have that kind of energy.

Unfortunately, on patient gateway, I can't see a list of past appointments and the provider. I really liked the Nurse that I had for Taxol Nº1. I never want to see Nurse Karen again.

The reason for this email is to alert the two of you that I believe I need to have a new primary infusion nurse, and I do not want that person to be Karen. I need someone who listens better, reads the previous infusion notes more deeply, and has a bit of humor. It makes sense to have someone who is regularly available for the morning hours on a Tuesday, though I do understand that schedules change. So, I am not saying I MUST always have the same nurse. Instead I want to have a nurse in my records who is apt to be available regularly.

Though I would appreciate a message back before Tuesday, I understand that time is in short supply. I will hope to talk about this on Tuesday with Dr. Herold.

Thank you so much for your attention.

Susan

= = = = 

Well, there have been many Nurse Karen complaints. She is on some kind of probation like thing. I will never have her again. The doctor has called to apologize. The nurse manager has called. I have been moved to another nurse permanently, one who is generally working early Tuesday. Katy will be my secondary since we have been together for a long time. The outcome is good. I was just able to eat an egg with melted cheese on top. Can't say I enjoyed it, but it was tolerable. Another 2 lbs gone since yesterday.

Taxol Infusion Nº 2

Yesterday morning, we once again, got up ridiculously early to head to Dana Farber for our 8:15 blood draw. The routine was different. Instead of heading to the second floor, we had to go to the ninth. Turns out when you are not seeing a doctor, vitals and blood are done in the same area as treatment. they called me fairly quickly. Vitals, then moved on to a new nurse, Nurse Karen, for port access and blood draw. It was a trial day, so she took 8 vials of the stuff. I was then sent back to the waiting room to wait an hour for the results.

Nurse Karen was not happy that someone had pulled the steri-strips. She is a bit concerned at the healing which she feels isn't great. There is a scab, but it is raw. I am to contact the hospital if it starts to ooze.

Blood work was okay. Couple of numbers had done some large movement, but evidently the only person who noticed and/or were concerned was me. Because this was yet another new nurse she knew nothing about me. I had to go through all the same stuff about slow drips etc. And then as she says she understands, she pushed the saline so fast my body couldn't manage. This was going to be a long, long morning. She asked questions, but didn't listen to the answers. She would say things back that almost contradicted my actual answer. I had to say "No, that is not what I said" at least 10 times. She didn't notice the extra Benadryl in the notes from last week. She called my doctor asking her to justify why I wasn't getting Xgeva this week. She practically snorted at the idea that I negotiate my treatment with my doctor. She had no sense of humor. And she.simply.didn't.listen. At all.

I believe I will not be assigned to Nurse Karen again. I need to make that happen. She did tell me that Nurse Katy, who was to be my primary nurse doesn't come in in the mornings, so I will end up in nurse roulette and she suggested that SHE be my secondary nurse. Nope. Not happening! A message will be sent to Dr. Herold today to figure out a better plan. I can not play Nurse Roulette. I need someone who has worked with me consistently and often; who knows my body and how it responds to drugs.

And then we started. Steroid drip, again, asked her to slow it. Benadryl drip. Pepsid drip. And then a thirty minute wait. And then the Taxol slowly for 20 minutes while she waited to see if I would have another reaction. I didn't so she went to "normal" speed and then I fell asleep. I don't know if I fell asleep due to the 5:45AM wake up or the Benadryl. Doesn't really matter. I slept for the rest of the infusion. Came home, and continued my nap.

Once again, appetite is suppressed. Dinner was not finished. Only managed one dumpling and about 1/2 cup of soup with a few noodles. And this morning, I am up at 4AM. I think that my early wake up is the steroids talking. I need WAY more than 5 hours of sleep.

The only client that wants me to continue to work for them has scheduled a meeting at 2PM, so I expect a morning nap will be a requirement.

And then V arrives from New Mexico!!!! I can not wait. We met each other as we were both getting started in this cancer world way back in 2005. We both had to change directions due to our diagnosis and we are both doing our best to find and live with our new realities. She is doing it cancer-free, but not penalty-free. My penalties have been much less severe, but I am doing it with cancer. That is the crap shoot of life.

Fourth Progression

14 months. That is all Xeloda could give me. Not very giving, if you ask me.

But back a few weeks. I had a pain in my shoulder, like a pinched nerve but not. I didn't think I had strained it doing anything, but the pain just stayed. And stayed. And then it got worse.

At my next doctor's appointment, my blood markers were up– again! Dr. C was clear. It was time for scans. And she wanted to add a MRI to the mix this time. And they were going to look at the brain stem. UGH.

Well, I wouldn't have reactivated this blog if the results had been good. More tumors in new places of my spine. No brain tumors but the top of my spine is now affected. And my ribs, also worse. Oh, and that pesky T3 which is probably why my shoulder was in such pain.

Dr. C reviewed the trials, which haven't changed much since we last reviewed them, and feels that none of them are appropriate. Nope, she wants [and will get] IV weekly taxol. I have no more veins. They are shot to hell after 12 years of chemo, scans, and blood draws. I need a port.

So, on March 14th, we woke at 4AM to head to the hospital. A snow storm was starting but hospitals don't close. My pre-op nurse was a guy named Stu, who usually works ICU. When he appeared on the floor, everyone called out "Stu." It was like a really, early morning "Cheers." My surgeon was a PA, and my anesthesiologist was a RN. They were both female. The PA, like so many young women of the millennial group, had the voice of a 12-year old girl. [Can someone explain this self-infantilization among well educated women?] It was hard to concentrate on the information she was giving me. The voice! Anyhow, she was over-riding the orders she had. Someone had said a medium double port, and she took one look at me and said "single, smallest size I have." We discussed placement. We discussed infections. Then it was the RN's turn, and we discussed nausea and vomiting and twilight vs fully under. And then they rolled me into the room. There were x-rays and then I was sent under. At some point I chattered "ah, you are pushing the catheter now" and the RN chirped back "I will give her some more juice!" They did bring me back up for the ultrasound since I had to hold my breath. They kept praising me for doing well. I finally said "I am so pleased that my years of studying for this moment is serving me well. YOU are the people who should be praised for doing well." They just laughed and sent me back under.

They nailed it. The port is right where I wanted it to be. I had no nausea from being under. I was home by noon. And then the snow got really serious.

Forward another week and once again we are up before the sun to get to Dana Farber at 7:30AM. Once again, start on the 2nd floor for blood draws, but of course, this time it was different. I now have a port. Oh she was so kind. She carefully explained exactly what she would do. She was disappointed that I didn't have a RX for the numbing cream. After she got what she needed, she left all the wires and tubes attached securing them with yet more bandages. I was free to head to the 9th floor.

Dr. C and my husband have never met. There was no reason to involve him for the past 5 years. I was able to drive myself, and there was no reason for him to waste a day of his month sitting in a hospital waiting room. IV infusions mean auxiliary drugs. You can not drive yourself home. He had to be with me, and it was time for him to meet Dr. C. She didn't talk to him. She still talked to me. Perhaps she was a bit stiffer than usual. Or maybe she was stiffer because this was a big thing she was telling me to do.

We rechecked in at the desk and waited for the infusion nurse to appear.

I was taken to the corner office. The view! Amazing. I suspect that this room is for newbies to bring them back. I will never see that room again! I don't think I will replay the whole time. There was an allergic reaction. Charge nurses were involved. Dr. C arrived. More benadryl was administered. The taxol was slowed down and an hour and half later, they let me go.

At home, I crawled into bed and slept. Benadryl will do that to you.

And today? Not bad at all. A bit steroid driven, but not crazy like back in 2005. I made some bread and cookies, but didn't eat them particularly. I am not starved. I am not jumping out of my skin. It is okay.

Cautiously optimistic. May this taxol stuff actually work!

Third Progression

Hearing that one's tumor load has increased is not easy. This is the third time, and it has hit me like a ton of bricks. My followup at Dana Farber [yea, I had to switch hospitals in order to keep my doctor] was much better than my initial visit. As V. likes to say, you made it your own. Well, she used more colorful language, but the idea remains the same.

Today was the BIG day at Dana Farber. Well, it was a big day for me. A friend said something the other day which stayed with me. She indicated that my odd and perverse sense of humor would find a home at the Dana. And I went with it. Today I decided that I would not let the Dana Farber happen to me, but instead would simply be me at the Dana Farber. What a difference that made!

Once again, I headed to the ninth floor and waited in line to be checked in. This time I said "Hi. I can't see your name tag. Ah! Jack, hi Jack." and I got a smile and even a bit of conversation.

I chatted with Heidi who took my vitals. Back to the waiting room, and since I was interested, I reinvestigated the "cafe." The three icons are actually a knife/fork, recycling, and trash. The coffee machine dispenses decaf and caffeinated coffee, and there is a third button for hot water. Today there were several types of tea bags and hot chocolate to choose from. The bowl still only held saltine-type crackers but there were too many to count easily. No knives or forks. Casual patients do not get snacks.

I was called back to see Dr. Christine on time today and she was ready. In preparation for our appointment she had results from the research group and had presented my "case" to her colleagues at their weekly round table discussion.

Two trials bubbled up, both investigating targeted therapies using different pathways. The first one requires a recent biopsy, so it is off the table. Bone mets are really hard to biopsy, are extremely painful, and have a huge failure rate. The other trial is investigating a pathway that has not generated a huge amount of buzz. But, Genetech has figured out WHO responds well. This requires a "stored" tumor onco test to test for this specific pathway. The end result is, I will do a study that used stored tumor sample to run a full onco-panel. This will allow us to know, in the future, which trials make sense. Since this panel will take about three month, I need to move forward. This trial will either be available or not when I need it.

So, I will start Xeloda. I will take it until it fails me. And then we will look at trials, knowing what pathways and mutations I actually have.

They sent me to the second floor where you have your blood drawn, and where you can talk with the pharmacy. First I chatted with the lab person, teasing her that she didn't want to talk with me, but instead just wanted to scan my bracelet. Once we broke the ice, we discussed our Christmast dinners. She is also making a ham, but with collard greens, a recipe that her grandmother taught her. For whatever reason, my insurance agreed to pay the Dana Farber for my RX. The young woman at the window and I chatted about my insurance company and why they approve or don't. As I headed home, I have at least 100 pages of papers outlining both the trial and study, a bag of drugs, and a parking receipt.

I will start Xeloda on Saturday. I have the gloves/socks, bag balm and immodium just in case.