Here's me, rocking the bald look on a recent happy day on my back deck ... one of my favorite places.
Got a lot to catch up on here! Sorry for taking so long since my last post. Some crazy things have been going on lately, and they've taken up both my time and energy.
Overall, chemo is going good, at least as it directly relates to Abraxane's side effects. Yes, I am low on energy. Yes, my toenails and fingernails are quite ugly. Yes, I am still bald (for the most part.) But I am not having peripheral neuropathy (pain/discomfort caused by nerve damage) in my hands and feet. Yay. Sounds like this is a very common side effect of Abraxane that I have somehow, by the grace of God, escaped. Every now and then I feel a tinge of burning, but I think that hardly constitutes discomfort. My power port is still intact, patent and working great. No problems there. However, part of the reason my nails are ugly is that they are separating from the nailbeds -- from the fingertips, downward. This creates a great place for foodstuff, juices, dishwater and germs to collect, therefore putting me at risk for getting an infection, since I am already intermittently immunosuppressed from chemotherapy. I make every effort to use utensils with all foods, and not eat with my hands/fingers. Especially now that I've experienced the joy of paronychia, an infection of the hand or foot where the nail and skin meet at the side or the base of a fingernail or toenail.
It began innocently enough ... I noticed a scant amount of greenish-tan goo just under the nailtip of my right pinkie. I "cleaned it out" myself with fingernail clippers and washed vigorously with soap and water. Over the course of several days, I noticed that the last segment, from the last bend to the tip (medical term: distal phalange,) of said pinkie was reddening. And it was becoming sore. It slowly progressed to deep red and very swollen, 2-3 times its normal size. It was quite a sight! I have pics, but I will spare you all! (I shared the gruesome pics with my mom and sister who live a state away.) I decided that it surely needed medical attention, so I messaged my nurse and told her I was coming in to be seen. I was seen by Dr. Coscio's nurse practitioner, who said it was definitely infected, which was fairly obvious. She sent me for an x-ray to rule out a bone infection (which turned out negative for that, thank goodness.) After the x-ray, I returned to the clinic and sat in the waiting room, and I noticed a red streak starting at my pinkie and heading up my hand, toward my wrist. I knew that this was not a good sign. I showed the nurse, and she was concerned also. She warned me that if I didn't get antibiotic therapy, pronto, that I could lose my finger! She said that they were planning to ADMIT ME through the ER for "immediate" IV antibiotics. I was instructed to proceed to the emergency room, as that would be the fastest way for me to get the immediate antibiotics that I needed.
I called Danny and told him of the plans to admit me, possibly for 2-3 days is what I was told. I walked on over and checked in at the ER (which is not an MD Anderson ER, but the hospital's, where MDA's satellite clinic where I get my weekly chemo, resides.) I saw a triage nurse. Told her of my finger issues, etc. She had received, via fax, some of my medical record from the day's clinic visit. A couple of pages, which she handed me and told me to give to the ER nurse once I was taken in. I took a seat in the waiting room. And there I sat, for about 3-4 HOURS!!!
A little background info: I was alone. I'm hardly ever alone at MD Anderson! Danny almost always goes with me, but this day, since I was just going to have my pinkie looked at, I decided to go by myself. With my treatments being once a week, and sometimes having extra testing or seeing other doctors about various other issues, we (Danny & I) miss at least one day of work a week. This really adds up since we own our own small business. We don't have many employees -- just 1-4 depending on the time of year. So if we are busy at work or working on a project and it looks like I may have more than one day's appointment at MDA in a week, I do sometimes "allow" Danny to stay at work instead of having to go with me. Allow is really not the appropriate word here. It's complicated. He wants to go with me. I want him to go with me. I am able to drive myself, and I don't get sick with my treatments. He keeps me company during all the waiting and infusions. It's actually kinda sorta in a really weird way like a date -- we go to lunch, or breakfast, and we are alone, for the most part. We get a lot of talking done on the drive. But sometimes it just doesn't make sense for him to miss even more work. Sooooo, since it was "just a pinkie," I went alone. And then had to call him, upset, that I was going to have to miss some of the kids' weekend activities, including an end-of-year band concert of my star percussionist daughter! And that he needed to pack me a bag because I was being admitted. Not only that, but when you have 3 busy kids at home, the parents can't just go to the hospital without working out who's going to keep the kids. And how are they going to get to all their things? Thankfully we have Danny's parents who live nearby and help us out tremendously whenever we have a need, especially when it's related to my medical appointments. So not only did he need to pack me a bag, but also make the kid arrangements.
I'm in the ER waiting room, and the hours start to tick by. I am getting aggravated (understatement.) At the time of my arrival, there were only two other patients in the waiting room. One is puking, continuously ... loudly ... into a bag. I am thinking that this is not a good place for a chemo patient to be for long. Soon the waiting room is full. Many patients who arrived after me are being taken in ahead of me. I go to the desk and ask how much longer before I am seen. It shouldn't be much longer, they say. I tell them that I was told that I needed antibiotics right away, that I could lose my finger. The red streak is growing more prominent on my hand and wrist, leading from my pinkie and heading upward. But clearly there is no urgency here. The urgency that was communicated to me at the clinic when they sent me to the ER was clearly not communicated to the ER. I'm a former nurse ... I definitely understand that if a patient is triaged with a red pinkie problem, that it's going to be fairly low priority. Not life or death. Can-wait-in-waiting-room-for-several-hours low priority. However, I was told at the clinic that I needed immediate antibiotic therapy, first dose. That I needed to be admitted for subsequent IV doses. That I could lose my finger. I thought that being a cancer patient, on chemo, with an infection issue going on, being sent to the ER from elsewhere in the same building, sent from the MD Anderson clinic, that all these things would mean something to the ER and I would be seen and given the immediate antibiotics that was being recommended by my oncologist. I thought wrong!
After the first hour in the waiting room with the puky patient, I'm not happy, and I'm still alone ... but I have my smart phone. So I message my doctor's nurse. Something like this: "Suggestion -- direct admit instead of admit through ER." In the medical world a direct admit is when a physician writes orders for a patient to be admitted and whatever else they want the patient to have done once they are admitted. The admission takes place through the hospital's admit department, not the ER. I am still thinking that I'm going to be seen in the ER, then be admitted. But I'm thinking that clearly MDA has not worked this partnership out well, at least as it relates to sending cancer patients to the non-MDA hospital's ER. Time is ticking by. I get a response from the clinic nurse that they really feel like the ER is the way to go for me to get the immediate antibiotics that I need. To that, I respond that I guess my idea of immediate and their idea of immediate are two different things. Then the nurse calls me on my cell, to say that the nurse practitioner just spoke to the ER and was told that it wouldn't be too much longer. Time is still ticking. Danny was finally able to join me, and I of course filled him in on all the happenings (I am pretty upset.) Another phone call from the clinic nurse who asks me "you have STILL not been seen?" and I say "No." I may not have the exact order and timing of all this down, writing so long after the fact, but I ended up sitting in the waiting room for about 3 hours.
When I finally got to see the ER doc ... he knew NOTHING about me! I felt like I had basically been dumped to the ER. I had to explain my whole finger/medical issue to the emergency room physician. There were no orders coming from my oncologist regarding antibiotics. When I told him the plans that were communicated to me ... well, the ER doc didn't even agree with me needing IV antibiotics, and he didn't think I needed to be admitted either. He called my onc and she OK'd his plans. He cut open my pinkie to try and squeeze the pus out (but there was no "pocket of pus" to squeeze, it was just all in the tissues not like an abcess, so hardly anything came out) but that turned out to be an unproductive and painful mangling of my finger with a scalpel. Uggghhh! What a day. Last thing, I did receive antibiotics, but in 2 separate IM injections -- one in each thigh. Honest to God the most painful injections I have ever ever had (don't ever get Cleocin IM, just saying.) Which then made me nauseated, sweaty and weak and just like that they discharged me and said ba-bye. Could hardly walk out of that ER my legs hurt so bad.
Gets me so worked up, just thinking about it all again!! If the oncologist had a plan, that plan should have been communicated to the ER, and not just to the patient! If you're going to be sent to the ER, to be evaluated by the ER doc, then tell the patient that! Not handled well. :((
Update: finger is better now, after a long course of oral antibiotics, many dressing changes and the disgusting loss of my pinkie nail. And I'm in a better mental state now. :)) Have lotsa other topics to cover, but will have to wait til next post. This bitchy one came out longer than I expected, sorry.