I've been wanting to update sooner, but I've either been too tired from chemo or my arm has been too sore from this ridiculous PICC line. Here are some updates about administrative drama, chemo, hospital discharge, etc.
Insurance Rules and Administrative Bureaucracy
So in my last post I wrote about the two different chemo options, traditional 7+3 or newly approved Vyxeos, which are both combinations of the same two drugs: Cytarabine and Daunorubicin, but administered in very different ways.
We had asked about Vyxeos, which was approved by the FDA last summer, and on Wednesday evening Dr. Zonder, the rounding doctor at the hospital that week, had agreed it was a good option. I had expected to start chemo later that day, but the chemo nurse never came.
Thursday we learned that because Vyxeos was approved for outpatient use, there was some administrative/financial issue with them administering it to me as an inpatient. The approval had to go all the way to the chief medical officer of the hospital in order for them to get me the drug. Through this whole process my basic understanding is that my insurance reimburses a different amount for the drug depending on whether it is given inpatient or outpatient, apparently with a higher rate if it is outpatient. The hospital wanted them to pay at the outpatient rate but still allow me to be inpatient, and the insurance wanted the hospital to take the hit on the extra cost. They apparently went back and forth arguing this most of Thursday and part of Friday.
I don't know what the rates are, how much extra the hospital was asking the insurance to pay. How much of a loss the insurance was asking the hospital to take. All I know, is that I told Dr. Zonder on Friday morning that if they didn't reach an agreement by lunch time that day, I wanted to just proceed with the 7+3 protocol immediately, rather than risk delaying my chemo until Monday. Afterall, he is the one that had told me I would likely only live weeks if I walked out the door with no treatment, and here we were already wasting 2 days over bureaucracy.
Lines, Lines everywhere
After agreeing to start the 7+3 treatment, I learned of an additional complication. Since the cytarabine drug infuses continually over a 7 day period, it requires that you have at least two lines running into your body. One for the cytarabine and a second for anything else that has to happen during those 7 days: the daunorubicin, blood draws, blood transfusions, and any other meds I may need like nausea or even just fluids.
The problem with this is that my port, which I had put in my chest 2 years ago to avoid getting IVs while going through chemo the first time around, only had one line in (also called "lumens") Because of this, they said I would need a peripheral IV for the 7 days. This posed a huge problem for me, because I have very bad veins. To the point that a 4 day stay at Beaumont in my pre-port days had left me with almost every vein in both arms completely blown out due to the fact they kept collapsing. I didn't even want to imagine what 7 days would do, when I would be going through chemo on top of the sheer awfulness of having the IV.
They assured me that they have this "expert" IV woman, who would come and had special tools and would be able to very easily find a vein and give me a very good IV. The special lady comes with her special machine that shows shadows of veins on my arm, and she cant get anything on my left arm. So we switch to right. She finally lands a vein in my right forearm and hooks up the IV. When she flushes it, I immediately complain of burning. I've been here with an IV before, she probably stuck the vein too deep. When my doctor returned I was very unhappy. Not only was the IV already painful 10 minutes in, but it was positioned such that I didn't feel I could use my arm, particularly when it came to things like keeping myself clean after bathroom trips.
The doctor at this point said we could try something called a PICC Line. A PICC line is basically similar to my port, but doesn't require surgery. They feed a wire through a large vein or an artery into the chest and up to the heart. They then put the plastic tubing over the wire and pull the wire out. In the case of my port, the end of the tube is then connected to some sort of mechanism that is underneath my chest. To access it, a specially trained nurse uses a special needle that sticks into the mechanism and connects to the tube, thereby allowing for blood draws, infusions, etc. In the case of the PICC line, they go in through a vein in your upper arm, and then instead of surgically placing a contraption under your skin, the wire just dangles out of your arm until the PICC is removed. They can apparently stay in for years if there are no complications. The PICC line has to be flushed on a daily basis and also has a special bandage that goes over it since there is now basically just a big hole in your arm with a tube sticking out, and anything that gets in can cause infections and the line goes literally straight into your heart.
Anyway, I'm a little off topic but I opted to get the PICC line without much thought or research on it. I really regret it at this point. it is now over a week later and my whole upper arm is really red and swollen. I couldn't bend my arm at all the first 4 days due to the placement of the lines and the bandage, so it cut off most of my communication with the outside world.
Doctors keep saying its not an infection and they think its some weird reaction to the dressing glue. I'm currently on my 3rd different type of bandage for it, but it just seems to keep getting more red. I'm also constantly paranoid about it hooked on something and tearing it out or getting the little leads that dangle out dirty some how, as this can cause an infection that goes straight to my heart due to the placement of the tube inside. Now that I'm home from the hospital it has to be "flushed" with saline every day, so if its a day that I'm not being seen in clinic Alan has to do it for me at home.
Chemo Time
Once the PICC line was installed they scheduled a nurse from the chemo team to come up and get me started on my treatment. After more than 15 months of no treatment, I was really anxious about it. Especially since I had heard from some people who got extremely sick during this chemo.
The nurse arrived in her miniature hazmat outfit. That's right, the chemo is so toxic that the nurses have to wear a special apron over their scrubs and also double gloves when handling it. And this stuff is being injected straight into my blood. So the protocol for 7+3 is that you receive the cytarabine all 7 days, continuously. They hang one bag that goes for 24 hours and as soon as its empty they replace it with another one.
The daunorubicin is to be administered on any 3 days out of the 7, and apparently my doctors chose for it to be the first 3. But this drug is different from other chemos, because it did not come in a bag and just get hung to drip into my IV. This drug is bright red and it comes in a syringe which the nurse has to manually inject into my IV over a period of approximately 20 minutes. Sometimes they split the dose into 2 syringes so that the nurse's hand doesn't have to stretch so far when starting the dosage. I am not sure why, but when I saw the red liquid in the syringes and found out that it was going to be the first thing I received and that the nurse had to manually inject it, something inside me snapped. I started crying and saying that I wasn't ready yet. Eventually I calmed down and the nurse started the injection. At first I tried playing some music to keep myself calm but my nurse was really nice and we ended up talking through the whole process. Once she was done with that injection she hung the bag of cytarabine and was on her way. She let me know that she was off for the weekend but that a different nurse, who had accessed my port on my first morning, would be coming to do the injection for the next 2 days.
I already had barely eaten anything since the doctors came to us with the news on Wednesday. That was probably a big mistake, because the nausea that rocked me over the next 4 days made it nearly impossible to eat. I didn't vomit during the chemo treatment, but that was more likely a product of the fact that I was eating about 10 bites of food every day than the fact that I was handling the treatment well.
Another side effect from the chemo was extreme fatigue. Like fatigue so strong that even sitting in bed with my eyes open was too much. My schedule for most of the week was: wake up around 730 when nurses changed shift and came in for new vitals, and doctors started rounding. float in and out of sleep all day, pretty incoherent most of the time that I was actually awake. Maybe get like 2-3 hours of actual "awake" time in the late evening, then fall back asleep around midnight for the night.
Every day, multiple times a day, they would draw my blood to check various levels. They were looking to see that my Hemoglobin and Platelets did not drop below transfusion level, and if they did, they would order blood for me. There was another clotting factor, cryo, that I also received a couple of transfusions of. Pretty much every day during chemo I was getting one blood product or another. However they never would transfuse enough to get me into "normal' levels, just out of the critical zone.
So far I haven't lost my hair, but it is a side effect of the drug and we expect it to happen any day now. I have felt the pain and tingling sensation on and under my scalp, so I'm just waiting for the first big clump to come out. I've decided that I'm not going to wait for it to get stringy and look bad this time, as soon as a giant clump falls I am shaving it bald. Summer is coming and if you remember my comment from 2 years ago, the cool breeze feels so nice on a bald head anyway. This is almost 18 months of hair growth on my head right now, and I will be sad to see it go, but if this treatment can help to heal me I won't be that sad.
The end of chemo and going home
All week we kept talking about what to expect after chemo. We honestly had expected to be in the hospital another week or two after it ended, because of everything they told us. I was already receiving transfusions daily, and the doctors continually commented that the most severe drops in blood counts would come in the weeks following the completion of chemo. There was also the fact that the severe drops also make you more prone to infection.
So I guess it turns out that at the point when you've lived in the hospital for 16 nights, the hospital becomes more of a danger to you than being home. Things like norovirus, staph infections, and c-diff apparently run rampant in hospitals, and the longer you are there the more likely you are to get them.
The first clue that we would be going home soon was on Friday, when I received two different phone calls from the Karmanos clinic. The first was to make an appointment for Monday to finally meet my actual doctor in the clinic (because of how things work with rounding in the hospital, I hadn't met him yet) and a second to set up appointments for labs to be drawn on MWF of the next week. The doctors hadn't mentioned anything when they rounded Friday morning, and never came back Friday afternoon to explain this, but I went ahead and set the appointments anyway.
On Saturday morning when the doctors rounded they said that my hemoglobin was low and that I had to get a red blood transfusion. I thought this definitely meant that I wouldn't be going home any time soon. So I asked the new rounding doctor (they had just switched out the day before) about the calls I had received the day before, and she explained to me about the infection risk for long term hospital stays and said that I would be allowed to leave as soon as I finished my transfusion for the day. They thought based on all of my levels that the one bag of blood would hold me over until my clinic appointment Monday, where I could receive transfusions if necessary.
So, Alan began gathering ALL OF THE THINGS to take home. We decided it would be best to take two trips, so he began loading the car and went home while I waited to receive my transfusion. While home Alan was able to do some deep cleaning on the house to prepare for my arrival. Vacuuming, dusting, mopping, cleaning the bathroom and kitchen. He prepared the basement for the cats by moving their food and water dishes down there. Once I got an updated time for the end of my transfusion he returned to the hospital so we could gather the rest of our stuff and go home.
I left the hospital with a long list of prescriptions and instructions. I am taking an antibiotic, an anti-viral, and an anti-fungal pill. They also put me on the pill version of the depo shot to stop me from having periods. This is a precaution because my platelets are so low and apparently having a period when your blood can't properly clot could kill you. They also gave me some continued meds for my ongoing sinus issues and some cortisone creme for my swollen itchy arm (around the PICC line)
It is nice to be home. I feel almost normal. Except my cats are crying from behind the basement door, and I have to stop to catch my breath on the way to the bathroom. But other than that, almost normal.
This blog went longer than I thought it would, so I will split off to a second post to talk about my clinic appointment with Dr. Yang at Karmanos on Monday.
Thanks again to everyone for following my story and for all the help you have provided. We have stiffened up on visitors being allowed just because the fear of infection is so high, but if people wanted to help with anything at all, below is a list of ways to help:
WAYS TO HELP
Monetary Donation
With me being off of work, Long Term Disability only pays 60% of my salary from May 2016 (since that is when I first became "disabled", regardless of the fact that this is now a new illness). Any monetary donation will be used to help pay our household bills while my income is reduced as well as go towards medical bills once my plan deductible resets on July 1.
The Go Fund Me page from before is still open, and I also have a PayPal link, which will not charge a fee on either end as long as you (a) have a bank account (not a debit/credit card) linked and (b) put it through as a friends/family money transfer (not for a good or service)
Supplies Donation
With my low blood counts we are finding ourselves in need of more cleaning supplies than usual. Alan is mopping and lysoling the house on a daily basis, cleaning the bathroom 5 or 6x per day. We are discontinuing use of hand towels in favor of paper towels for hand washing because of the ability for hand towels to carry germs. Alan has started an amazon registry, where people can make purchases that will ship directly to our home.
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