Infusion #3: Modifications Made

Yesterday marked my day 1 of cycle 2 (aka my 3rd out of 12 chemotherapy infusions).  Chris and I arrived at 10 am, to a completely empty waiting room at the cancer care center, a sharp contrast to last week's overflowing crowd and standing room only.  I was summoned immediately for my blood draw to once again evaluate my blood counts and metabolic panel (kidney and liver functions as well as blood sugar and electrolytes).  Since accessing my port is necessary for my infusion, the phlebotomist volunteered to set up IV access at the time of the blood draw.  This is the first change from my previous appointments and actually quite convenient because I avoided a poke in the arm and I already had placed EMLA cream (a numbing agent) on my port to decrease the pain. However, this is a much more laborious process than just sticking a needle into the skin.

Accessing a port that is buried under the skin requires extra training and caution to avoid infection risk, so they clean repeatedly with swabs containing a comprehensive anti-bacterial agent (but unfortunately, smells horrific, worse than rubbing alcohol).  They then place the needle with IV tubing directly between the prominent 3 dots of the port (see picture below).  Being on the thinner side of average, my port and these dots are easily visible, which nursing and lab staff seem to appreciate.  After the tubing is setup, it must be securely covered to not only stay firmly in place but also to avoid potential bacterial exposure near the site of entry to such a major blood source.  Unsuccessfully, I tried to coerce the phlebotomist to give me a different adhesive covering than I received at the last visit, since I had a striking rash/hives in the area of the adhesive that lasted nearly a week despite steroids (I have an adhesive allergy).  As she was unsure of what dressing was used, she used the usual TegadermÔ, which rapidly developed into a fiercely itchy and red rash (see picture).  Regrettably, by the time I arrived at the infusion center (around 11:40), the covering required removal by the RN and replacement with a hypoallergenic bandage instead.

Preparing for the blood draw further, the phlebotomist grabbed all her blood tubes (with their pre-filled preservatives) and pre-filled syringes of saline and heparin to flush the port before and after the blood draw.  It's amazing how many supplies are needed just to perform a simple blood draw.  What usually takes 5-10 minutes, including the numerous times that they verify your name, spelling and date of birth, this time it required nearly 15-20 minutes to complete this entire process.  But, I was in no hurry as my appointment with the doctor followed and not scheduled to start until 10:30 because she utilizes the test results to completely assess my health status and ability to proceed with the imminent infusion.

After the blood draw, I returned to the waiting area, where there were now 2 persons, other than my husband.  Chris was busily showing an elderly woman in a wheelchair, how he uses his smartphone to access information (to explain the symbols from the coat of arms on his sweatshirt, in which she had inquired) .  I could hear them chatting as I was undergoing my blood draw, but was pleasantly surprised and impressed that Chris was actively befriending others in the waiting room (this is usually what I enjoy doing and he's usually focused on his magazine, phone or kindle).  Nonetheless, this lovely woman was clearly enamored by his hospitality and we later ran into her at the infusion center where she struck up another conversation as she was leaving the infusion center and I was still receiving my medications.

No sooner had I sat down in the lobby, before I was called back by the doctor's medical assistant to obtain my vitals (weight, blood pressure and temperature).  He proceeded to take us to the exam room where he reviewed my medications, allergies and current symptoms.  After gathering the information he needed, we were left alone to read or play on our cell phones.  Given my difficulty staying focused and the 20 minute wait, I found myself bouncing between the book that I brought and reading emails on my phone.  Chris was eagerly catching up on the time-limited games that he plays with friends via his phone (such as words with friends, dice with buddies, word feud, hanging with friends, matching, and when he brings his headphones, songpop).

When the doctor arrived, she immediately gave us the good news that my counts were virtually the same as the ones prior to my last infusion 2 weeks ago.  While my ANC (absolute neutrophil count) is still at a level that potentiates the risk of infection, it remained at 0.6 (2.0-7.0 is the normal range).  Without any signs of infection seen during the thorough exam that my doctor performed, I was set to proceed.  However, we discussed my symptoms, side effects and future testing and followup prior to advancing to the infusion center.  In reviewing the insomnia side effects and the subsequent fatigue associated with the high dose steroids that I receive as part of my pre-medication, we elected to trial a decrease in dosing. Steroids are not without side effects, so we chose to decrease dosing by 40% of the usual dose of 10 mg and see if this still helps with the nausea but without causing the insomnia (I only sleep 1-1.5 hours on the Friday and Saturday nights after infusion).   The risk of doing this, is that I may have an increase in nausea or vomiting, but I can take oral compazine if this occurs in the first 48 hours and ondansetron (Zofran) after 48 hours, if necessary.

Well, by looking at the timing of this post, you probably guessed that the decreased steroid dose has not made a tremendous impact yet on abating the insomnia.   Thus far, the nausea is greater than usual but as long as I'm not moving or standing for long, it is tolerable.  If I need to be on my feet for more than 10-30 minutes, I would definitely take the oral medications or suffer the consequences.  If the nausea manages to stay at this level, I will probably try to go without the steroids at all, for the next infusion.  But, it is a balancing act and in medicine, we often have to choose between the side effects of medications and the potential consequences of not using them.  In this particular situation, neither is life threatening (insomnia or nausea) unless it leads to vomiting and dehydration, which can in turn increase the risk of infection and hospitalization.  In the back of my mind, I wouldn't mind eliminating the steroid medication because of it's GI risks (increased reflux and ulcers), association with high blood sugars and bone density risk (increases osteoporosis risk).  My pre-medication infusion still consists of 2 other glorious anti-nausea medications that are quite long acting.  Aloxi (palonosetron) has a 40 hour half-life* and Emend has a 9-13 hour half-life.  The dexamethasone (steroid) has a biological half-life at 36-54 hours (which correlates well with my 2 nights of sleeplessness).

All in all, the cancer journey must remain a malleable process.  As long as no material changes are made to the 4 active cancer-killing agents for Hodgkin's lymphoma, adjustments can be made to try to balance out risks, side effects and patient desires.  Never be afraid to mention something that bothers you in any healthcare journey or process.  If I hadn't mentioned my insomnia and the distress it was inflicting or the irritability of the pruritic rash from the adhesive, no changes would be made and I would be unnecessarily suffering. It's empowering to work with your physician to resolve treatment issues and improve the overall management of your condition, especially when the ill effects can be potentially more harmful in the long run.  

* Half-life refers to the time it takes for half of the drug to be eliminated from the blood stream, by the average, healthy person. Biological half-life is used when a drug has effects in other areas and how long it takes for half of the initial effects to be eliminated.  

 You cannot change what you refuse to confront.  

My port-a-cath in the upper right chest wall with catheter extending into the neck. 

The arrows point to the 3 dots outlining where to insert the needle into the port.  You can faintly see along the periphery, the redness remaining from yesterday's brief encounter with adhesive.  The vessels above and below the port are somewhat distended due to the catheter (a long tube that extends into the blood vessel, in this case, the jugular vein in my neck).  This decreases the caustic nature of the medication allowing it more time to mix with my blood decreasing damage to the vessel wall.