The updates for the past month (!) are going to come in stages by topic area; trying to include everything in one post would overwhelm me, take forever, and be a bit much for one post. There are many good things to share, a few delightful bits, and then some in the not-so-fun category.
I spent recovery from chemo #7 with a sick toddler in the house, trying to keep him away from baby and from me, while also trying to get both Chris and me some rest along the way. Um, yeah. Minimal success there. Baby stayed healthy. I don’t know if I got what Luke had or my own special version, but I woke up from a nap on Christmas Eve afternoon with a fever, productive cough, and laryngitis! Luke was also iffy, so it was off to the ER at 6:30 p.m. Christmas Eve for both of us. I got hydration, a chest x-ray, and the first dose of a Z-pack along with a script to take home for the rest of it. Good thing CVS is open on Christmas! I also had the joy of getting blood cultures done. In case you don’t already know, this means getting blood drawn from two sites, and, no, the two tubes of the PICC line didn’t count. One from the PICC, one from my hand. Sigh. I have given birth three times, including once med-free; you’d think I wouldn’t be such a baby about needles. But I am, “and that’s the truth.”
Christmas itself turned out eventually (more on that in The Family Post) and I felt better as the days went on. Definitely a longer recovery and more tiring than previous times, but I suppose the bronchitis played a part in that!
The next medical excitement was getting my port placed. The PICC was removed on the 27th after my hydration appointment, and that was no sweat–I couldn’t even feel it coming out. Quite unlike when it went in. QUITE unlike getting the heart cath out in May. I did have to get a blood draw between that and getting the port in on January 3rd, but as it happened I got pretty much the best stick of my life with that one! Stephen, who was with me for a SECOND repeat of the cystic fibrosis infant screen test, was much less happy with his heel stick, although he still took it like a champ.
So. Port. Bit of a funny concept since it goes under the skin and then they go through the skin each time they access it…but the only difference between that and regular blood draws or IVs is the location (on the chest). And, really, no stranger than perpetual tubes hanging out of my arm. It is also, certainly, much less hassle. No weekly dressing changes, no tubes to deal with (including keeping it dry in the shower…much convolution), and most importantly, greatly minimized risk of infection by comparison.
It is an out-patient surgical procedure, but fortunately this time I was later on the docket, so didn’t have to show up at 5:00 a.m. Yay! And…drumroll…another round of sedation, this time with no baby to worry about. Double yay! I will say again, I LOVE that stuff! It is a very good thing that it is administered by responsible anesthesiologists, at least in my case. The port placement was done by the same surgeon who did my biopsy in March; I really liked her and felt very good about my care with her, so I was happy to see her again in less anxious circumstances. She also got to meet Stephen, who she knew was on the way two days after I did, and before many of you reading this, so it was a nice full-circle moment. She and I got to chat a bit, and she and Chris chatted a bit when she came out to talk to him after the surgery (which went very well) and the upshot was that she thought I look better now than I did when she met me; she also asked if I have wondered how long I have had this. Well, yes. More about that in “The Me Post”.
Recovery was fine; a bit of soreness and limited mobility, but that faded quickly. I went for chemo #8 the day after the surgery, so I was a bit flinchy when they accessed the port since they had to press down a bit to get the needle in. That went well enough, though, and I was officially two-thirds of the way through chemo! In some ways it’s been forever since I started, and in others this is flying by. The eighth treatment was a milestone in that I’d then had as many with Stephen out as I had with him in, and as many more to go as I had for each of the first two blocks. I’ve been anticipating these last four rounds as being the easiest, without pregnancy and immediate post-partum issues; my oncologist provided a ray of sunshine by pointing out that the fatigue effects are cumulative and many people “hit a wall” during the last two treatments. Thanks, Dr. S.! 😛 I have noticed that my “down” recovery days now are much better than while pregnant, and would go so far as to say a down day now is about the same as good day while eight months pregnant, so if nothing else it can’t get worse than it was when I was pregnant. Go figure.
Which brings us to yesterday and chemo #9. The treatment itself went as usual, including the joy of Benadryl (got to sleep it off at home with my snuggly baby). We did, however, have a fairly serious and potentially game-changing conversation with my oncologist at my standard pre-treatment appointment, about the big R. Radiation. It has always been on the table on an “if needed” basis, but for a long time the end of chemo was far enough away that there was no way to tell if it would be needed. And, quite honestly, I’ve been living in a bit of denial about the possibility of needing it. Apparently it’s still not clear if it will be needed, but now that my mid-point PET scan results are in we need to move forward.
Basically, since we don’t have a baseline PET pre-treatment because of the pregnancy, they need to make the radiation decision based on the PET we do have, which is essentially my baseline. If that mid-way-point scan is clear one would normally finish out chemo and be done. Since mine still showed “bulk disease” around the heart as well as still-enlarged lymph nodes in the original discovery sites (axillary and neck), albeit significantly reduced, I am in a “gray zone” regarding the necessity for radiation. If the PET after chemo finishes still shows disease, obviously we move on to radiation to finish killing this sucker off. If the second PET is clear, we face the hard questions of risk-benefit. Radiation gives us a better certainty of killing off the lymphoma and not facing a quick recurrence, but it carries added risks of secondary cancers (breast and leukemia, in particular) as well as, in my case, heart disease due to the location of the most problematic mass. Radiation has advanced significantly over the years and they are able to use a minimal field, so much less exposure than before. But the risks are still a part of the picture.
So. If the PET is clear and we do radiation, we get immediate (relative) peace of mind but longer-term concerns. If it is clear and we forego radiation, everything might be just fine, but I might also have a quick recurrence, at which point the next step is likely autologous stem cell transplant (I donate stem cells to myself, essentially) which is a much more rigorous procedure in and of itself and of course carries even more long-term risks.
To help us, and, quite frankly, both my regular oncologist and the specialist we saw back in the spring, decide on the best course of treatment, I am getting a couple of referrals to “next step” people. The first will be a radiation oncologist here, to discuss how radiation would be handled if we end up doing it. The second, to help with the trickier questions of if and how much, will be a medical research doctor at Sloan-Kettering in New York who extra-specializes in Hodgkin’s treatment. Funny, Chris and I had just been talking about what it will be like for me to have normal energy levels and do things like go to New York and walk around for a day after all of this is over. 😛 So, we probably won’t walk ALL over, but hopefully we can manage a nice lunch. Anyway. Hopefully the specialist will have helpful numbers in terms of risks and benefits and what specific PET results on this next round will mean.
Here’s what I think. You can quote me, or not, when we get to the time when this decision is actually made, but I’m going to throw it out there. I think I am in for radiation, even if on a “better safe(r) than sorry” basis. So now I am left hoping that I do a minimal course (3 weeks instead of, say, 5 weeks), but that is not my call at this point. Just seems to be how it’s going. I feel good about getting everything zapped when all is said and done; I just get the feeling we will be going further than chemo. I’d be happy to be wrong, provided the chemo does the trick! But.
I’ll probably have a bit more to say about how I feel about everything in “The Me Post” but for now, as far as I am able to articulate, I am worried and scared about the long-term issues more than the short-term problems of beating lymphoma and going through radiation, as difficult as that will be. And after a week in which several “and we should know since we do this all the time” people have made strong, specific points about how well I’ve been handling all of this…I am ready to get mad about not just being done, already. Potentially somewhat premature anger, but hey.
So now…I am also facing how far I have come from the place of peace I was in when all of this hit. I think there was some adrenaline-euphoria at play then, but I was also in a better place spiritually. I was worn down in other ways but not by the endless round of medical thoughts and treatments and possibilities, and I had clarity enough to know where I needed my focus to be. So now, I seek to stay right here, right now, in the consciousness of my past, present, and future held safely in God’s hands as always. And in my bed, with my big boys playing with Daddy and my tiny boy in my mom’s loving and generous hands. And a nap waiting on the other side of the “Publish” button. More later.