Counting down, again

It was very recently brought to my attention that this blog has been languishing lately, and in actual fact it has been a fairly full month since I last posted. So here I am.

I started radiation near the end of April and was set up for five weeks (26 treatments). I have seven more to go. On Friday, May 31, I will receive my (hopefully) final cancer treatment. Assuming this did the trick and it doesn’t come back (and I am going to assume that) I will be done. My hair is growing out, my energy levels can only get better, summer heat has arrived, we are ready to move on.

It’s been a [fill in the blank, not necessarily profane] year. So many blessings have come our way and come out of everything. So many trials and so much stress and exhaustion and suffering of various kinds have come our way. The EOB’s alone have killed a few trees. I am told the chemo did not actually kill brain cells, but it sure feels like it when I try to remember a name or a detail or if I actually went to radiation this morning (true story, that happened last night).

So, how AM I doing? Tired, still. Strangely less so for the past week than 2-3 weeks ago; the tiredness is not a sharp drop as it was following each chemo treatment, but rather a slow decline over the course of treatment. Maybe it’s just hard to tell the difference anymore. My skin is a bit pink where the treatment field lands, maybe a little more sensitive than normal, but not bad. My throat is a bit scratchy/dry, but not actually sore, and cough drops help. The daily slog out to the hospital is, well, a slog, but it has become fairly routine. I will be glad when it is over.

I have had body issues with radiation that I did not have with chemo. To receive chemo, I would go to the infusion center with Chris or my mom or someone, and I would sit in a comfy chair and put my feet up and be offered snacks and a drink (non-alcoholic, sadly). The nurse would come, and even if they had to gown up in hazmat to give the three manual-push chemo drugs, we could still chat and the nurses were cheerful and…and. For radiation I put on a gown and lay on a hard table with my arms over my head and I chat with the nurses for a few minutes while they move my body into position, and then they leave and I stay in a cool, sealed room, on a hard table, with lasers lining me up and a machine all around me. And the machine buzzes a few times, moves around from back to front, buzzes a couple more times. And the nurses come back in, lower the table, I lower my arms, and it’s done for the day. I had a very strong emotional reaction during and after the first treatment, feeling more like just a body getting treated than a person than I ever had before, even when my three medical divisions were wrangling over when, where, how, and why I would give birth (what and who were never in question, thankfully). That reaction has faded somewhat but is still in the back of my mind every time I walk into the treatment room.

I also had a moment last week of looking in the mirror and seeing shorn hair, scars, and extra weight. I felt a twinge of despair, and then that made me mad enough at all of it to decide to be proud of what this body has endured and accomplished and managed in the last nearly 15 months. Bodily vanity has never, even through three full rounds of pregnancy and post-partum time, been much of a struggle for me–I might, in fact, have somewhat too little of it–so that moment caught me off guard. I left it behind relatively quickly, and I think did so in a way that strengthened me against future incursions, but it was disconcerting.

Thank you to all of you who have travelled this road with me, who have read this blog and prayed and helped in countless ways. It is almost over, and it is truth to say that WE are almost there. I may have felt quite alone at certain points, but I always knew that I wasn’t.

And, speaking of never being alone and journeying surrounded by love, do you all know that I have the most amazing husband in the whole wide world? And that we have fantastic, incomparable, unspeakably wonderful parents? I do. 🙂

Posted in Family, Hodgkin's | 4 Comments

The Final Frontier

Yeah, I’m not sure myself what that title means. But here’s a quick update:

I had a PET scan on April 1st, and the results showed some activity in the chest (mediastinal mass measuring 3.2×3.9 cm, down from 5 cm in December) and some “dying off” activity in one spot near my left clavicle. The super-specialist doc in the big city wanted to biopsy the big mass, to check for a) other cancers (unlikely), b) a benign mass (only slightly less unlikely), or c) the presence of Hodgkin’s in the mass. 

We went over on Monday night, 4/8, and spent the night (consolation prize: fantastic tapas restaurant for dinner) before reporting the following morning for “the procedure”. It was a needle biopsy so not as invasive and not as difficult a recovery as others I’ve had, but the fun surprise for this one was that I was AWAKE! Remember last spring, when I thought I’d be awake for the original biopsy, but I wasn’t? Switcheroo! In all honesty, it wasn’t any worse than getting an epidural…but then I also wasn’t somewhere between “pressure” (EXTREME “pressure”) and “Baby! Cute baby! Snuggly baby!” so the motivation just wasn’t there. However. It’s not my favorite memory, but in the immediate aftermath my biggest complaint was that I didn’t get to eat until 1:30 in the afternoon that day. 

The results of the biopsy came back as scar tissue. Which, per my local oncologist who actually answered my many questions (specialists giving results over the phone = not great at clarifying), in light of the PET results, probably means that there is active lymphoma but in a relatively small area that the biopsy didn’t reach, and most of the original mass has collapsed and left scar tissue. This is good news. Given the PET results, I was a shoo-in for radiation with no doubts, but given the biopsy results we now know that the radiation will almost certainly do the trick, no nastier treatments required. I will go back to the radiation oncologist sometime this coming week for recalibration of my field of treatment (adjusting the beam to include what showed up on the PET) and will start radiation, if not this week then the week after. At this point I am not sure how long that will last–the original number was four weeks, but I don’t know if the most recent PET will have changed that–but I will be done before the end of May. Remember when I though I was going to start chemo before the end of May? Yeah, it’s been a bit of a year.

And it’s not over yet. I hit another big cancer milestone today: I shaved my head. As you will see in the pictures, my hair had gotten pretty (pathetically) thin. As of March 1, my last day of chemo, it was thin but (I thought) passable. Since then it has kept falling out (that should stop and regrowth start sometime in the next month or so) and it just got to a point where it will be easier to deal with it, practically and emotionally, if it is just gone. So, here are a few pics to show you my new look.

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Before: The view from the front.

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From the back

 

 

 

 

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Joseph got in on the action (with an assist from Luke and then Daddy for the close).

 

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Not really something I saw myself doing, ever, before last spring. Things change.

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The (former) contents of my scalp.

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And that’s all she wrote.

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Familiar and strange

My life right now feels almost familiar, like a distant relative with whom I am becoming reacquainted. This is the month of reprieve. My energy is back up (meaning, back up to around 75% of normal, without getting knocked down to 40% every other week), my immunity is back up (again, relative, but a faster recovery), no doctor visits, no “bing bing BONG” from the IV pump. Cooking (dishes, ugh), moms group, grocery store! Hobby Lobby! Grocery store!

Just over three weeks have passed since my final chemo treatment. Twelve down, NONE to go. I drove myself to hydration/Neulasta shot appointment the day after, and on the way home I cried. From relief that this part was over, yes. But also in mourning for the year I’d just had, in recognition of the sad, sick, sorry, tired, fearful, apathetic, stressed, worried, disconnected, resolute person I have been. For the tired, tired, TIRED person I am. For the sacrifices that have been made, relatively few of them by me, and the work that has been done, relatively little of it by me, and the changes that have been endured, to get me and my family to this point.

I told a friend last week that I keep hearing people say how having cancer changed their life and made them a better person. Well, I am here to tell you that cancer has certainly changed my life, but I really don’t think I am any better a person than I was before. It would be nice to feel like all of this was somehow redemptive in the short-term and for my earthly benefit…but for now it is enough to have survived it. The rest will have to come later.

I might know myself better. I know now that my strength is in endurance more than in action, but also that I can do what needs to be done. I know that I have relatively little physical vanity, but what I do have is outraged about the hair loss and the scars and looking older (I do) and following doctor’s orders without fail. I know that I can forget that I LOOK like a cancer patient when I am going about my business and hanging out with my kids, but it’s harder to forget that I am one. I still think of it as my little secret out in public, but I had someone ask me if I’d had cancer. Turns out he had, too–testicular cancer in his early 20s. Takes one to know one, eh? Or or maybe just to have the courage to name one out loud.

In case you were wondering, I didn’t shave my head. My hair is very thin, but it is still there and what is left is “mine to keep” as my oncologist cheerfully informed me. It is still falling out a bit, but less and less. Hopefully that will stop soon. Then the fun of all of it growing back in will begin…nobody really talks about having your hair grow back in when it only partially fell out. I’m willing to bet it looks pretty funny. See that? Outrage, talking a good game.

Still. I am relieved that chemo is over. I am still, every day, incredibly grateful that Stephen is healthy. That he survived his internship with me and Hodgkin’s. I can look forward and see the light at the end of the tunnel, even if a biopsy and radiation are in the way and blocking the light a bit. It’s almost over. At least, the treatment phase is almost over. Recovery, physical and emotional, is a longer game than that, but from the standpoint of survival mode, recovery mode looks like a pretty decent deal.

I am thankful to have a portion of my brain back. My memory is still shot–not that it was great to begin with–but one of the most disconcerting effects of chemo during the recovery days was feeling like I couldn’t think. Like decisions were overwhelming. Like it was impossible to deal with more than one child at a time. It was a constant state of disorientation for several days at a time. HOW WILL I EVER BE ABLE TO DO THIS?!?! I would wonder, as I contemplated the fact that someday I will not have a nanny or my mom or other caring adult around all the time. Someday I would be alone with my children again. Well, three weeks out, it happens quite a bit, and it’s okay. It’s very good, not least because I can think again. SO glad that part is over!

And now. We have also been blessed in the last three weeks in so many ways. Meals. Flowers. A gathering for celebration. Prayers. Sweet concerned inquiries. And in the mail, a surprise from afar, a sign that people we have never met are thinking of us, praying for us, ministering to us as a manifestation of the love of God. If you ever wonder if the little bit that you have done for someone matters–it does. All of the little bits add up, but each one is no less valuable for being part of a bigger whole.

Posted in Family, Hodgkin's | 6 Comments

Winding down

I posted in October:

“I am thinking of making a paper chain to count down my remaining chemo treatments. Two down, ten to go! One sixth of the way there. See? It’s flying by. 😛 My plan is to rip that last loop into the tiniest possible pieces, then set them on fire in a tin can in the middle of the street. Catharsis much?”

And now…the end is clearly in sight. Whatever happens next in this battle–radiation, biopsy, other, or none–I will be done with chemotherapy as of next Friday, March 1. I never did make the paper chain, but I still kinda want to burn something. My hospital ID bracelet from that day? Meds list? Hmmm. The bracelet is a lot of plastic, so probably not the best option. I’ll have to think of something…open to suggestions!

It is SO NICE–if foreign–to think of the next round of recovery. My energy levels will climb slowly out of the chemo pit for the last time…and then I get to keep them up for a while. My immunity will jump back up…and stay there, while I go to church, and the grocery store, and Bible study and mom’s group and Hobby Lobby and the pub. Not necessarily in that order. It is a matter of divine Providence that this (at least a quarter) Irish girl will be in the clear for outings right around, oh, Saint Patrick’s Day?

Nobody wig. I only drink good beer and I can only stand to pay for one in a given night.

I am just so tired of being tired. And with radiation possibly in the wings this might not be the end…but it is one step closer.

Stephen was three months old on Tuesday. We saw the pediatric urology surgeon yesterday and he was cleared from further monitoring of his lack-of-gallbladder situation. If he gets jaundiced we are to call in, but otherwise, carry on! I am so grateful that he is healthy. It is a thing of wonder to look back at where we were three, four, six, nine months ago and then to look at his sweet face and not have to worry.

More about our baby: He weighed in at 12 lbs. 8 oz. on Wednesday. Respectable, but since I recall that Joseph weighed 14 lbs. at two months and 17 by four months, Stephen is still our peanut. He likes to sing along when the family bursts, as it will at times, suddenly into song. His “real” hair is growing in and is lighter than the baby hair. Sometimes in the sunlight, if we squint, we see traces of red…but sometimes it just seems dark blond. He loves his brothers and watches them carefully; this might be more a matter of self-preservation than of pure curiosity, but it’s still fun to watch. He is infatuated with ceiling fans. Window frames are also good. He has started rubbing his eyes when he’s tired and can usually get his fist to his mouth when he wants to.

HE SLEEPS!!!

That deserved its own paragraph. A baby who sleeps more than three hours at a time (if that) is a complete novelty in our household. It is the hand of God’s blessing upon us that this baby regularly goes 5-7 hours at night and has, several times, gone 8 hours. We take no credit; other than formula feeding our methods are pretty much the same, so it’s either the formula or Stephen himself. Either way, it is a huge blessing.

There is much more I could write, about our family, about my emotional state, about what has changed for me and for us, about the overwhelming amount of help we have received from friends through all of this and recently in particular, about how the older boys have adjusted to all of it, about the simple pleasure of feeling well enough to cook…but for now, this is enough. Except…

Please pray for my friend Sarah as she nears the birth of her baby girl who will not live long outside the womb. Sarah and baby Naomi are heavy on my heart right now and I want to ask those who read this blog and pray for me to hold them up to the Father as well. Thank you.

Editing to add: Sarah started a blog to tell and honor Naomi’s story at: babynaomigrace.blogspot.com

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Stay the course…

Is the upshot of yesterday’s consult with the big-city doc. Her recommendation (read: doctor’s orders) are to finish the sixth cycle of chemo and do a PET scan again a month afterward. I will do the scan with them rather than locally so their radiologist can read it. Apparently he is one of the top PET scan experts for Hodgkin’s, so he is one of the best people to be able to tell exactly what the results mean. Since the PET results will determine whether or not I am done, or if I need a biopsy, or if radiation is warranted, it will be good to have a clear reading!

This is good news for us in that life stays relatively calm for now. The testing and subsequent discussions and decisions are still out there, and in some ways I was hoping for something definite, but definite would have meant action, activity, upheaval, and a different impression than the one we got from this doc, which is that I am not that complicated but just need to give the chemo time to act and then get the best scan possible so we can make the right decision. Overall, I prefer to be someone who doesn’t faze the experts.

The biopsy is still on the table and it seems like she will want to do that if the PET still shows activity. It could show “gray area” which can be residual matter that is not active or can have some activity…so, the biopsy could very well show that the cancer is gone. Or it could show that it’s not. This is all speculative, though. She described the procedure and it sounds like it would be more of a needle biopsy than a “traditional” incision. Since they are talking about accessing something in the middle of my chest, this sounds better than what I was imagining. Beware the power of imagination in the mind of a squeamish person!

So. Chemo #11 on the 15th, and #12 on March 1st, assuming no infection or other interruptions. Then I have most of March clear–appointments of various sorts, surely, but no treatment, and thus the chance to have some time to recover. Some time to have whatever the “new normal” for my energy level might be. A month. March was such an intense month last year…the retreat that changed so much for me, making the appointment with the surgeon, finding out I was pregnant again, the biopsy, the diagnosis. I imagine I will spend the month both trying to soak in as much normal as possible, and marking the anniversaries as they go by. It will be Lent, too, which seems appropriate for the type of contemplation I foresee.

Today (this week) I am recovering from last Friday’s chemo and feeling very blessed. I took the step the other day of asking friends for more help with the boys, mainly in the afternoons, so I can get more rest. It is already happening, and already helping. It was hard to send that email, since I first had to face gaping holes in any humility or capability I might claim. The latter, hopefully temporary, while the former…well. Getting refined by the day.

I haven’t been an “I can do it all!” person since high school, maybe college, when I took overachieving and ran with it. Still, the part of me that lingers from that driven time does NOT like to admit that “just a little chemo” is getting in the way of what I do want to do. How foolish am I? All of this provides a major reality check on a daily basis.

Please continue to pray for us: for healing for me; for energy and endurance for Chris; for health and happiness for the boys. It’s too much to hope that they are not touched by all of this, but I pray with all of my heart that the effects are minimal. Please also pray for my aunt, for my brother’s godfather, for a friend whose baby is due in two weeks and will not survive long following birth, and for a young lady who was just diagnosed with ovarian cancer at age 19.

Posted in Doctors, Hodgkin's | 1 Comment

In which it gets interesting…

I am sitting in the chair for Round 10 of chemo, and it is Luke’s third birthday. The Benadryl is kicking in, but when we go home I will stay awake long enough to have cake and lunch before opening presents with him. Then I will crash to sleep it off.

I was in a rough place last Wednesday, a day on which just the thought of coming here today made me cry. Actually, most thoughts made me cry that morning. By the end of the day, amazingly, I was feeling much better, but that morning? I just wanted to come home from my counseling appointment and hide. A lot of the problem was that the last round of chemo made me, not more tired, but tired longer, than previous rounds. And the baby had a colicky-type evening, and the big boys were crazy with being stuck inside due to weather. And then there was the cancer stuff.

At my pre-treatment appointment two weeks ago my oncologist wanted to talk about the next steps in my treatment. We talked about moving forward with radiation and about me going to see a specialist for a consultation. And apparently the Bendaryl really is kicking in, because I just remembered I wrote about this in my last post! The part that is relevant to this post, though, is that all of that information, and the implications, and the emotional toll, all hit over the course of the recovery weekend (Saturday-Tuesday). Also, my hair is going. It’s been thinning since October, but since adding bleomycin to the mix post-pregnancy the rate of thinning has picked up. I always have hair on my shoulders and pillows and sofa cushion, all over the sink and bathroom floor when I brush my hair, stuck to my hand like the Sasquatch when I rinse it in the shower…it’s really getting annoying. It’s visibly thinner, though it still does cover my head, and while I hoped to make it through treatment without losing it completely, all of it falling out like this is annoying me enough to make me want to shave it. I’ve been holding out for Luke’s birthday, and probably my trip to the big city to see the big doctor next week…but after that all bets are off. No specific date in mind, but I might just shave it on a random day when there are 376 hairs too many on the floor of the bathroom. Fair warning. I’ll post a pic.

I’m pretty clear on being annoyed about the process of hair loss, and mad about needing radiation, but on top of that, I was (am) really struggling emotionally with both of them together combined with the fatigue I’ve been feeling. I don’t want to lose all of my hair (and, incidentally, I still have to shave my legs?!?! Whatever!), I don’t want to need more treatment, and while I was exhausted the thought of more exhaustion to come just made me…cry and want to hide. Quite honestly.

And now. Yesterday at the pre-treatment appointment my oncologist went over some of what to expect at the specialist consult next week. At this point in the game it almost feels like an assault. Yes, an assault of the things that they want to do to make sure I am CURED at the end of this, but still.

Maybe radiation. Or not.

Maybe the sixth cycle of chemo before moving on. Or not.

Maybe an experimental drug that has had good results in more severe cases of Hodgkin’s. Or not.

Maybe a biopsy of the mediastinal mass hear my heart. Or not. But, from what he said the specialist was saying, likely.

Maybe autologous stem cell transplant. Or not.

Definitely at least one more PET scan in the course of whatever happens next, which will likely be a combination of more than one of the options listed above and possibly others that haven’t come up yet.

The stem cell transplant is the one that scares me the most. Ugh. I just really do not want to do that! As my oncologist said yesterday, though, we are dealing with a form of cancer that can be cured, and while the cure has significant risks, possible risk trumps certain cancer. True enough.

So. We go to the city next Tuesday carrying printouts of medical summaries and scan reports and CDs of radiology scans…and we come home with way more information than we ever wanted and, hopefully, a plan. And, possible, more appointments for the family calendar.

In the meantime, and in the aftermath, I am working on getting more rest. I am asking for more help. I am doing my best to stay in the present moment. I am snuggling my boys. I am taking my vitamins. I am going to my counseling appointments and keeping tabs on my emotional state. I am praying that all of this is done soon and especially that it is done in time for our summer travels to visit family and friends. I am offering up all of this for friends who are dealing with much more difficult situations. I am offering prayers of thanksgiving for the many people who have helped us through all of this. I am trying to read a book or two. I am baking bread again. I am trying to stay calm with the kids. I am still processing the reality that just doing chemo now seems like the easy way out, and it’s not the way I am going to be taking.

Before I finish, a final request for my prayer warriors: in addition to me and my husband and our families who are taking this ride with us, please add my aunt who is dealing with breast cancer; my brother’s godfather who has melanoma; a friend whose baby will not survive once she is born next month. Thank you all.

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The Medical Update

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.

Posted in Doctors, Hodgkin's | 2 Comments