Red, red...world?

I'd really rather be singing "red, red wine" though! I'm also being forced to stop and smell the proverbial roses

It always amazes me how quickly time passes. I could have sworn that I just wrote and posted the previous blog post about my worsening side effects, but suddenly it's almost a month later and I really can't account for where the last month has gone. Some of that time has obviously gone in treatment and visits from friends, but for the rest, I really can't say. Having said that, there's a lot that's happened in the last month, so let me fill you in! Also please note that I'll be sharing some images that may be considered a little graphic and that this post is a little on the longer side. If photos aren't really your thing, consider this a disclaimer to skip the images. It's hard for me to illustrate what I'm talking about without the images, so I'll take my chances that I don't entirely gross you out.

What's so red about my world?

It would appear that almost everything of relevance in my current world is some shade of red. What do I mean by that exactly?

Well, when I last updated you, I was towards the tail end of the first three months of my chemo with my last two infusions pending. I also mentioned how I'd had a reaction that resulted in painful skin lesions but that we seemed to know the cause. The assumption was that the antibiotics that I was taking to manage the rash that resulted from Panitumumab was the cause of the fixed drug reaction. As it would turn out, we were wrong.

By process of elimination, the dermatology team at MD Anderson has since concluded that I was actually reacting to the Taxol, not the antibiotics. Unfortunately, Taxol was the drug that I was receiving until the last week of my last chemo cycle (2/21), which meant that the skin lesions continued to worsen and spread across my body. How bad was it? Well, like I said earlier, there's nothing like a picture or two. I'll spare you the 20 or so images that I have for the lesions across my body and give you a small sample instead to illustrate what the lesions look like.

The first image is of the underside of my upper right arm and the second is of my right hand. The lesions always started with my skin turning red and itching, before progressing to the darkening you see in the pictures, peeling and the burning sensations. With each additional exposure to Taxol, the existing lesions worsened and new ones developed across my body. After my last Taxol infusion on 2/21, the pain from the burning sensation all over my body was so bad that I ended up asking for pain medication to help me sleep at night. During the day, I simply limited movement as much as possible. The lesions are also unfortunately on my feet and legs, which has made walking a rather painful endeavor. As the lesions start to heal, the deep, almost purplish colored skin you see peels, leaving behind red, itching, still peeling patches.

Red is also supremely relevant from the perspective of blood. As you can imagine, watching my counts is extremely important during this time. It would appear that at least some of the extreme fatigue I was feeling in February could be attributed to a drop in my hemoglobin levels. While I started this whole process with hemoglobin levels that were lower than the standard range, by mid-February my hemoglobin levels had dropped too far. I was so low on energy that I was even questioning if I could manage to receive the last infusion of Taxol on 2/21. It turns out that there's a relatively simple solution to this hemoglobin issue - a blood transfusion.

I went in for my 2/21 infusion armed with the knowledge that I needed to push for a blood transfusion. I was prepared to insist upon speaking to my care team if the nurse I was assigned disagreed with me in regards to the blood transfusion. In the end, my nurse did agree but my infusion on 2/21 ended up being a bit of a, well, shit show for a number of other reasons.

When things go wrong at once...

As is typical of life, when things go wrong, it's not just one thing. The infusion on 2/21 ended up being one of those situations where if it could go wrong, it went wrong. While I'm normally a patient person (except when driving...), this whole process has taught me a whole different level of patience. Well, patience and the importance of having fully charged smart phones and iPads!

So what exactly happened on 2/21? Be warned that this is long, in part because I want to, as always, give a realistic view into the things that cancer patients experience. Let's start with my blood draw. Unfortunately, due to the number of skin lesions I have, the phlebotomist struggled to find a vein from which to draw blood. She succeeded in the end, but not without a few failed attempts first. But the real issues started once I was called back for chemo.

Now, I'm an overly prepared person who is fortunate to have access to lots of friends and family well versed in the details of medicine. I'd had a good friend point out to me that my hemoglobin was to the point where I should definitely be receiving a blood transfusion. Our conversation allowed me the chance to be prepared to discuss my symptoms (extreme fatigue, shortness of breath, dizziness, heart palpitations, etc.) with the nurse to lead her to double check my hemoglobin levels or, if necessary, for me to push for the blood transfusion directly. In reality, my treatment protocol had not indicated that there was a threshold below which a chemo infusion should not be given, which is why my hemoglobin levels had not been proactively checked by the charge nurse. Luckily, when I pointed out that my hemoglobin levels were low, the nurse checked and immediately confirmed that I needed a blood transfusion.

But receiving a blood transfusion for the first time ever is not as simple as telling them your blood type, especially as a cancer patient. In fact, there's a strict procedure that must be followed where in you must have blood drawn for testing by two different phlebotomists. The blood must then be tested for a number of things, including antibodies. The test, however, can take up to six hours to run depending on what they find and how busy the labs are. Since I was already called back for chemo though, the nurse decided that she would first take care of the chemo infusion and then walk me through the rest of what I needed to take care of. But more on that in a moment.

As I mentioned, needing a blood transfusion wasn't the only issue of the day. You may recall that I have something called a port through which chemo is usually infused. It was surgically placed below my collarbone with a catheter that connects directly to one of my jugular veins. Each time I receive chemo, a qualified nurse must perform a small process to access my port. One of the steps in this process is to not only place the needle in the port but to also check for blood return. This is done when they're flushing the port with a syringe of saline. While they are pushing the saline in, they will also draw back on the syringe needle to see if they get some blood in the syringe. Having good blood return is a must in order to ensure that the chemo will go into the veins as desired. Having chemo drugs escape from the veins can result in complications that range in seriousness from being just a small nuisance to a potentially deadly issue. Nurses will not administer chemo through the port if there isn't good blood return.

Typically, when there's no blood return, it means that a small clot may have developed or that the needle placed in the port is just hitting up against the vein wall thereby preventing blood from flowing through to the saline syringe. In either case, if the nurses in the ATC (Ambulatory Treatment Center) are unable to get blood return, they are required to send you to Infusion Therapy where another nurse will assess the issue. If needed, the Infusion Therapy nurses will administer an anti-clotting medication into the port, after which you must wait a minimum of an hour to see if the drugs worked and if there is now good blood return.

As this was the day where "if it could go wrong, it would go wrong", my nurse was unable to get any blood return when she accessed my port. Faced with the challenge of giving me my chemo infusion, needed to send me to get blood drawn for testing so that I could eventually receive a blood transfusion, and needing to get my port blood return issue addressed, my nurse needed to come up with a game plan, and fast. I also had an appointment with the dermatology team that I needed to make in order to discuss my skin issues. Luckily she was up to the task.

She quickly decided to set up a separate IV line in order to immediately give me my chemo drugs. Unfortunately for me, it took a few attempts and a blown vein before she succeeded in setting up the IV line in my arm. In the meantime, she coordinated with Infusion Therapy so that I could receive immediate attention after my chemo infusion was completed and with my Medical Oncologist to receive signed orders for a blood transfusion.

After my chemo infusion was completed, I headed down to Infusion Therapy where the nurse attempted to re-access my port a couple of times. While I typically apply a numbing cream to my port area when I know it will be accessed, the numbing cream had faded by that point, and having my port re-accessed was not a pleasant experience. When accessing my port again failed, the nurse administered the anti-clotting medication and asked me to return after a minimum of one hour so she could check to see if there was any blood return.

I then went down to the Diagnostic Lab to seek out two phlebotomists to draw my blood for the requisite tests for the blood transfusion. At this point in time, there were no visible veins left on my arms that they could use due to the skin lesions and all the other pokes I'd received throughout the day. The two phlebotomists instead had to use smaller veins in my hands, which is always a fun experience. I then ran over to Dermatology for my appointment in which we established that the drug causing my skin issues was actually Taxol but also that all they could recommend was that I continue to apply the topical steroid they had previously prescribed.

Well over an hour had passed so I returned to Infusion Therapy where luckily the nurses were able to get blood return through my port. This was essential as I would eventually receive my blood transfusion through it. And thus the waiting game began. Until the test results were ready, I could not receive my blood transfusion.

Thankfully there is an apparent advantage to having your blood drawn later in the day (I had it drawn around 3:50 pm or so), which is that the labs are less busy than they are in the morning. Additionally, it would appear that my blood didn't carry any antibodies, etc. that would have resulted in the need for additional testing and blood matching. Rather than taking the full six hours as initially projected, the test results came back within three hours and I was able to start my transfusion around 7 pm or so. My doctor had decided to give me only one unit of blood, which is typically administered with doses of Tylenol and Benadryl to manage side effects and takes in total about 2 hours to transfuse.

Interestingly enough, it's expected that when you receive a blood transfusion, you will start to feel better immediately after. In my case, between the Benadryl and the excessively long day, I couldn't quite feel a difference. But in the days that followed, the improvement was immediately apparent. My hemoglobin levels are, ironically, not even that high but in the days since the transfusion, I have felt like I have energy levels similar to what I had about six weeks prior.

Stopping to smell the proverbial roses

The chemo infusion on 2/21 obviously meant that I was exposed to Taxol yet again, resulting in a worsening of my existing skin lesions and the appearance of new ones. Due to the level of pain and the severity of the lesions, I was seriously concerned about jumping immediately into a new chemo regiment on 2/28 as originally planned. As I've mentioned before, I'm seriously nervous about these new drugs (called AC for short), and there is no way of knowing if the drugs would exacerbate my current condition. I therefore reached out to my doctor on 2/26 to ask for a one week break in chemo to allow my body to heal a little, which she agreed to. I'm thankful that she agreed because the amount of improvement that I saw in just one week was seriously motivating. While the lesions are no where close to being healed, I at least feel like I can function and the break from introducing chemo into my system coupled with the blood transfusion have given me a level of energy I've not had for at least a month.

The break was motivating enough that when I went in on 3/7, I was fully prepared to begin AC and face a new set of side effects. As I told a friend, "I don't know if I'm ready to kick chemo's ass so much as I'm ready for chemo to hand my ass to me again". My care team, however, had a different opinion. They took one look at my lesions and decided they would prescribe oral steroids to help with the healing process and give me an additional week break. I never thought I'd push to start chemo, but I found myself trying to convince my care team that I was ready to start. The nurse rather bluntly said, "if you feel as bad as you look, then you need this break. Let's get you to the point where you no longer scare small children and then we can start." To which I replied, "well, I might still scare small children no matter what", but I understood her point, even if I wasn't ready to agree.

And so I find myself being forced to stop and smell the roses. I clearly have mixed emotions about the extra week break. While I know that I will benefit from it, this whole journey is already so long that I don't want to extend it even a little bit. Two weeks is really nothing in the whole grand scheme of things, but right now, it feels like an eternity.

Having said that, this little break is also allowing me the chance to celebrate a spot of good news. While I didn't have chemo on 2/28, I did still have an appointment at MD Anderson for an ultrasound. The team wanted to see the level of progress made from the first set of chemo drugs. On 3/6, during a follow-up appointment with my breast surgeon, I learned that the only place they could find a measurable amount of cancer was in one of the axillary lymph nodes and even that has decreased from the original measurement. While the true test of response rate to chemo will be after surgery when the pathologist checks for the amount of live cancer left (hopefully none), I'm still celebrating the good news!

Next Wednesday, 3/14, I should be starting the next set of chemo drugs (see the Treatment Schedule page for updated chemo dates). In the meantime, I will be continuing treatment on the side for my voice (I'll provide more details in another post) and will try my best to enjoy these next few days of relative freedom from chemo!