MLO Knitting

Archive for the ‘Anaphylaxis’ Category

I was feeling comfortable after my Monday meeting with Ms. Clarity and The Chemo Nurses. I got my calendar, and Tuesday got my go ahead to move forward. The port worked well – and they used a numbing agent so I didn’t feel it when she put the needle in to take the blood for my CBC, CA-125, BRCA 1/ 2, and HNPCC (Lynch Syndrome) tests.

While I was there, Ms. Clarity spoke with my allergist who advised the addition of an H1 blocker as well as an H2 blocker and steroids to my overall protocol. This is a double whammy against histamine production – to way oversimplify things. I haven’t found a good explanation online from a trusted source. Anyway, histamine is what causes allergic symptoms to occur. By blocking those from occurring, the hope is that no reaction will occur – or, if a reaction does occur it will be quickly counteracted.

At this point, I’m feeling a little nervous due to my reading up on carbotax and my own medical history. I have been living a bit too much of the outlier life for my comfort when it comes to medicine. So, just as I am about to embark on the chemotherapy protocol with minimal worry, what comes across my allergy medical news feed, not once, but twice:

Fatal Allergic Reactions Triggered By Common Chemotherapy Drug

A new study from the Research on Adverse Drug Events and Reports (RADAR) pharmacovigilance program at Northwestern University Feinberg School of Medicine identified 287 unique cases of hypersensitivity reactions submitted to the FDA’s Adverse Event Report System between 1997 and 2007 with 109 (38 percent) deaths in patients who received Cremophor-based paclitaxel, a solvent-administered taxane chemotherapy. — Medical News Today

The article went on to state that certain of these reactions happened despite pre-medication. If you are atopic enough, it doesn’t really matter, and I know this. Doing a quickie search with the terms “ anaphylaxis taxol” search at PubMed (the Internet face of the older face of Medline), you get 41 hits with the oldest from 1993. Some of them are more encouraging than others, but the overall outlook is less than bright.

Even the rapid desensitization information I came across advised one-on-one nursing care with a resuscitation team on site. Desensitization doesn’t normally include one-on-one nursing. Of course, rapid desensitization is more dangerous.

Now, I dislike it when synchronicity is being too active. That just makes me nervous. I don’t trust synchronicity. Like any irrational human being – and all of us are irrational to some degree, no matter our education or claims otherwise – I find this a little bit unnerving. The information wasn’t particularly new, but the timing couldn’t have been weirder.

Do I believe this is a sign from the universe? Not really. But, it does make one ponder why this was in my allergy feed at just this moment in time. That is just weird.

We had the post port / pre-chemo visit Thursday afternoon. It was interesting. Thank goodness I had brought a book that I had just started.

We arrived at 1:15 and immediately heard the doctor being paged to call the ER – never a good sign for a quick visit. Of course, immediately after that we heard at least two calls from other physicians calling him. And, then the waiting room starting piling up.

I’m glad I had book to keep my nose in. Of course, there was a heavily pregnant couple in the small waiting room. They were, thankfully, being very unobtrusive. Then the mother, father and small child came in. This is not a waiting room most small children would be comfortable in. Thankfully, the father did take the child out as s/he was getting very agitated at being stuck in such an unstimulating environment.

Why don’t parents bring a favorite toy or something if they are coming to a non-peds doctor? I mean, doesn’t that just make sense? I seem to recall always having either a book or some game with me when I was a kid. Even small children have games that can entertain them. I’ve seen it when I worked in the children’s section of the library.

Anyway, we finally got in to see the doctor about 2 hours after we arrived. Yes, I said 2 hours. Now, he is usually not running that late, but when the ER calls and other doctors are calling, you know the office has become a zoo.

Once in the room, I explained, once again my concerns about the drugs. Thankfully, one of the chemo nurses wrote everything down and is calling the drug company to check formulations against my allergies! In an attempt to reassure me, Dr. Professor explained the minuscule odds, even among atopic patients, of a reaction. My answer was, “I seem to be living in outlier land right now.” He had to concede that was true.

Ms. Clarity was then reassuring me that they would be watching me very closely the entire time. And, she explained that they have epinephrine, and, if absolutely necessary, I would be sent via 911 to the hospital. Subsequent chemo would then need to be done in the ICU under an allergist’s supervision.

I don’t have the greatest history with immunotherapy. Remember what I said about living in outlier land? Well, I’m one of those patients who did not tolerate immunotherapy very well. As in repeated systemic reactions, not well.

Ms. Clarity also said I would be getting benadryl intraveneously, as well as low dose steroids for the day before, of, and after chemo. I may have been being a pain, but I felt I needed to point out that I have had reactions that took 3 epinephrine shots to counteract and have had enough steroid suppression to get a rare pneumonia. Yes, I am being paranoid. Perhaps I’m focusing all of the fear on the allergic reaction? Maybe, but its familiar, and I found plenty of literature indicating its high allergenicity.

Weirdly, no one actually looked at the port. I did however ask why I was having so much back and neck pain from it. Enough that I have been taking both prescription M.otrin and V.icodin in order to sleep. The tension is so bad that it actually travels into the back of my head. Thursday night I couldn’t even pick anything up past a certain level without feeling pain. It was really weird.

I was told that this isn’t that unusual. Some people just don’t adjust to having the port as well or as fast as others. It still sucks. Thursday night DH yelled at me to start taking the painkillers in a more consistent manner. Did I mention I am not very good about taking painkillers? You would think I would learn.

So, I have to do a peeing plus blood test for Monday. Yes, I get to collect 24 hours worth of urine to make sure my urine output is ok for chemo. I don’t recall if I mentioned that while I was in the hospital, a few people mentioned I was peeing like a racehorse while emptying the catheter buckets. I understand that they have to check certain levels, but hey.

On Monday, they will also be doing the two gene tests that will let me know if I need to warn my female relatives to be checked. I think Lynch Syndrome is more likely than BRCA 1/2 considering my family’s medical history. Of course, the chance of either is rather low, but I feel it will be better to check and warn than to not check. I mean, due to having had several relatives who had had colon cancer and melanoma, I was already doing preventative care for both. (As were most of my relations on that side of the family.)

So, Monday, I also get all my nifty chemo prescriptions that I fill vs. the ones that they give me on Thursday. Thursday is when the first chemo treatment will be. They said it will probably take about 4 hours. I’m taking my nifty netbook to play games or write. They don’t have a working wireless and most cell phones don’t get any service in their location.

Of course, that we got out of there at 4 PM irritated DH to no end. He was grouchy and grumpy the rest of the evening – except for when I fed him pasta. He’s a good man, but this is getting to him. Of course, without his beard and mustache I feel like I have robbed the cradle!

This past week was one of doctors’ visits. On Monday, there was none, but I was just tired. This may have been because I tried to wean off the pain pills too fast. Yes, I tried to do that again. Did I mention that doctors have yelled at me for this?

Tuesday

Tuesday was a visit with my ob/gyn, Dr. Compassionate. He is the same doctor who did my D&C. Seriously, this man has an amazing bedside manner. You may cry with him, but it is truly with him, not because of him. Dr. Compassionate said my stitches were healing beautifully. As a matter of fact, I am healing a week ahead of schedule. I still have about 3 weeks for the internal stitches to heal. He did take me off of all restrictions that don’t involve internals, though!

Dr. Compassionate asked us about when chemo was starting and getting my port (more later) put in. DH thought he was the gating factor, but, Dr. Compassionate pulled back from that question to make it clear that that was for Dr. Professor and my gyn/oncologist, Dr. Sunshine, to decide. We told him the plan was to start chemo in either the first or second week of June. Before we left, Dr. Compassionate gave me a hug. From what MIL, the nurse, has said, our situation has shaken a lot of the medical personnel who know about it.

Wednesday

Wednesday was the day we met with Dr. Perfectionist, the general surgeon. He is an Iraqi doctor who refuses to speak anything but English – even to his Arabic patients! He also has earned the respect of all of the other physicians and nurses around him. He is the person they all say to go to get your port put in. And, yes, my MIL knows him well and warned him that her daughter (in-law) was coming to see him for a port.

What is a port, you ask? Well, since I have the world’s lousiest veins, the doctors all feel that it would be best to make it easy to access a vein for both getting blood and getting the chemo into me. The port is a device put into the upper chest that accesses a vein for just that purpose. I don’t like to think about it much. I’m scheduled to have it put in on Friday, May 29th.

I have to say, however, his office staff leaves much to be desired. Both were rude and gruff and could not handle the little insurance blip we are dealing with. You see, earlier in the day, my DH had gone to the pharmacy to get my l.ovenex prescription filled. Now, the pharmacy guys were great, but, the insurer sent them a letter on the medical but not the pharmaceutical benefits. As a matter of fact, they gave them the wrong number for the pharmaceutical benefits. The letter they got faxed to them had all of the things a medical practitioner needs for billing. We gave this to the woman and she was like – this is not good enough. Thank goodness my MIL was there!

This woman was also being a pain about interruption of coverage. The date of end of coverage for continuation of care without pre-existing conditions is 63 days in my state. We were well within the time and had no actual interruption in coverage. (Due to my allergies, I am really familiar with this and have gone without things to make sure I have never had my coverage interrupted.)

Thursday

Thursday we met with the gynecological oncologist (gyn/onc), Dr. Sunshine, for our post operative check-up prior to starting. His office, unlike Dr. Perfectionist’s office, were not phased by the insurance insanity that has ensued. The receptionist called and despite having to inform the person on the other end that she had just asked them that question and repeatedly having to explain that she was in another state, was able to get things in order for our visit.

We went over the chemotherapy stuff again, and Dr. Sunshine mentioned something that didn’t register until today – one of the drugs is from the yew plant. I didn’t think anything of it until I went Friday to get paint thinner and saw a yew plant. It’s an evergreen. I am extremely allergic to most trees – including evergreens. I hope the substance does not contain the protein I react to. (I will be calling my allergist to make sure he has been consulted. For that matter, before this started, I was supposed to see him again.)

Funnily, when we asked if Dr. Sunshine had consulted with Dr. Professor yet, he mentioned that when he called Dr. Professor, Dr. Professor told him he needed to know he was at a card game in Las Vegas. There is a legend that Dr. Professor has been banned from various casinos around the country for card counting. No one knows the exact veracity of these rumors. Dr. Professor is smart enough to know how to count cards without being caught, I think.

Now, while Dr. Sunshine is awesome, I’m not so sure about his Nurse Practitioner. She was sent in because I asked about counseling and support groups. Specifically, I do not want to hear about people who are surviving for their kids. DH and I went through why we needed someone who had dealt with infertility. Not 10 minutes later she was talking about young women who had infants and small children. Hello? You are a gynecological oncology nurse. You should be familiar with psychological issues surrounding infertility. I nearly lost it completely when my voice broke and told her, “I would give every minute I have left to have had a child.”

The Nurse Practitioner also kept pushing how the group therapy would be a good thing because I now have a life-threatening disease. See, there is a disconnect for most people here. My fellow anaphylaxis sufferers, which is more predictable and manageable? Anaphylaxis or treatable cancer? I have been living with a life-threatening disease where leaving my house puts me at risk of dying because I don’t control my environment since my late 20s. This cancer is, to my mind, a new, minor change.

Now, I realize that non-allergists and non-anaphylaxis sufferers don’t really get that life-threatening part. The thing that bothers me is that I can’t seem to communicate that walking into an unknown place could lead to my immediate death if they are popping popcorn and I don’t exit fast enough. Cancer looks simple in comparison. Annoying, but simple. Perhaps I am weird in my outlook here, but the first time you come close to dying from something innocuous, you start looking at life completely differently. (Yes, DH has pointed out the worry with reactions to the chemo drugs. Rapid immunotherapy or complete depression of the immune system, anyone?)

After seeing Dr. Sunshine, we went to Dr. Professor’s office because of insurance issues. Insurance did not want to cover my l.ovenox. I have two blood clotting disorders – double heterozygous MTHFR and PAI-1. I’m having a port put in and it is important a clot not occur once it is there. I’m also recovering from a major surgery that endangers me in regards to clotting. L.ovenox is sort of important in these situations.

DH and I knew we chose the right location for chemo when they didn’t even blink and described exactly what was going to need to happen. Of course, I found out that no one had written the giant red letters about popcorn on my chart yet. They were shocked. Yep, I know it is rare. I also loved how they looked at me like are you kidding when I described my various (bad) ER experiences where I have been told you can’t pass out from anaphylaxis. See, your circulatory system stopping tends to cause a loss of consciousness in most people.

I made my post port / pre-chemo appointment with either Dr. Professor or Ms. Clarity. When they asked if I had to see Dr. Professor I said I thought it didn’t matter since Ms. Clarity ran the office. My meaning that she kept care of the things he doesn’t have to be involved in. The checking of a port is pretty straightforward from my understanding unless there is a problem. Good PAs and NPs – especially those in specialties – know when they need to get the doctor involved. They implement with more autonomy than an RN, who in turn, has more autonomy than an LPN, etc. Offices are run by support staff, not doctors. Doctors need bandwidth to keep up to date on treatments, diagnostic changes, surgical procedures and their own professional stuff. I don’t want them doing stuff that can be done by a PA, NP, RN, LPN, NA, etc.!

Friday

Friday was a day I got to sleep in and do a little shopping. I went to get paint thinner as my mom – who is staying to take care of me – wants to paint my front door for us. It does need it and she is better at it than either DH or me! We also went to K.ohls where we both bought some clothes. She did better at the clearance rack than I did. I got tired faster than I expected. That part sucked.

On the medical front? DH got my drug refills and found one of the drugs went from a 30 day supply to a 28 day supply and went from a 40 USD co-pay to a 110 USD co-pay. He has been rather grumpy since. (Can’t say I blame him.) Really, something has to give in regards to this. Thank goodness we have insurance as the drug in question is 4,000 USD for a month’s supply sans insurance. Something has to change in the USA in regards to our medical system.

I meant to blog these each day, but, for some reason, tended to be tired by the end of each day. So, you get to suffer a rather blow-by-blow of the week and its jumble of emotions.

I am also way behind on email and apologize to those who have not yet heard from me. I am getting there!