Hello to all! My name is Kristie and I just joined this group ... posted an introduction, but thought since I am the caregiver and not the patient, perhaps I should introduce myself in this forum as well.
My husband Blaine was dx with a PLGA slightly over three years ago. He underwent a hemi-maxillectomy at that time, losing his soft palate, hard palate, cheekbone, and teeth on the upper right side. The surgeons were confident they had gotten everything, so he had no chemo or radiation at that time. He was fitted for an obturator (which he hated!) and told as soon as he had been cancer free for one year, he could have a free-flap procedure done. Although it was stressful, as everyone here can attest when you hear those words "Sorry, it's cancer" things seemed to be pretty clear cut with regard to treatment/reconstruction and we considered ourselves extremely lucky.
Fast forward to six months later: our just-turned-four-yr-old-at-the-time was dx with leukemia. Fortunately, she was blessed with a favorable prognosis and handled her treatment very well, but the chemo regimen for pediatric leukemia is two years, two months, so we knew we were in it for the long haul. As such, Blaine's reconstructive process was put waaaaaayyyyyy on the back burner and he was left to pretty much fend for himself, with his ongoing check ups, dental appointments and never-ending tweaks to the obturator. There are only so many hours in the day, and he and I agreed that our four-year old needed us more, so his big surgery to reconstruct his sinus cavity was postponed.
When she had been on treatment a year and a half, and he had been cancer-free for two years (instead of the initially recommended one year) he flew to Seattle and had a free-flap procedure done, with removal of the fibula. The surgery was partially successful, but the graft shrank up quite a bit and developed a hole in it .... then the surgery to correct the defect was unsuccessful, so until recently he was in the planning stages for implants (my, oh my, how he misses his teeth!!) and a second free-flap procedure. Compounding the first free flap procedure is the fact he got an MRSA infection in his leg, requiring two additional surgeries to clean up the infection site, and six weeks of PICC line antibiotics. I have to say, that was probably the lowest I had seen him to that point, both physically and mentally, even lower than the intial surgery when he came home with a trach tube still in.
About six-eight months ago, he began complaining of facial pain (more intense facial pain, I should say. He has had chronic pain since the initial surgery ..... is this normal?) Our daughter, six by now, finished her chemo regimen this past December, and yep, you guessed it, in January a PET scan determined Blaine's cancer had returned.
I just feel like we can't catch a break! We had barely finished celebrating her victory when WHAM! we got hit again. Then I feel guilty for complaining, because they are both still here with us and I know others have not been so fortunate.
Blaine is currently back in Seattle and began neutron beam radiation treatment last week. The plan for now is four-five weeks of radiation (no chemo) then re-scan in however many months. He will be doing the first two and a half weeks of radiation by himself, then I will be flying out to help him to the end. I am nervous because the side effects of radiation appear to vary so greatly from patient to patient and we have no way of knowing what to expect and what shape he'll be in when he comes home, or when he'll even be able to come home.
That is one of the reasons I feel so frustrated --- we are active duty military, and live in Georgia, nowhere near family. His local PCM is a good guy, but obviously not an oncologist. His oral surgeon is three hours away, so even a "simple" appointment means he misses an entire day of work. His "big" surgeries are in Seattle. Every time he undergoes any surgery (and he has had thirteen in the past three years!) we have to fly someone out here to help with our kids (ages 6, 8 and 9) so I can be with my husband. Or, several times, for his more "minor" surgeries that take place at an Army hospital three hours away (like repair of the trach hole that never closed on his own) he just goes by himself and stays in the hospital alone, while I stay home with the kids. We've had to base those decisions on "how big is the surgery and what is the likelihood Blaine will need assistance afterwards" ... then decide whether I go with him or stay with the kids. So I either feel guilty for leaving the kids (which I know they're fine .... they LOVE Grandma flying in to take care of them!) or I feel guilty that my husband is undergoing so much of this without my physical presence and support.
I just feel frustrated. NOTHING seems to go right for the guy. For example, his last surgery, to try and remove the new tumors (unsucessful, due to the location of one tumor near his carotid artery) resulted in a split/forked lip, which meant *another* corrective surgery ... etc. He seems to have adopted a one step forward, two steps back approach to everything ... of course no fault of his own, but upsetting nonetheless.
I know he's tired of feeling lousy, and very upset that due to pain and fatigue, his overall quality of life is fairly reduced. We have three young children who don't understand why their dad can't come outside and play ball with them anymore ..... and in the meantime, we keep wondering, "Will *this* surgery take care of things? Will he be cancer-free after radiation? Will he ever be pain-free again?" and of course, the answer to all those questions is "every patient is different and we just can't tell you how he will feel down the road." (sigh)
Although I have never felt angry with him, and I know none of this is his fault, I have to admit that I'm tired of him feeling crappy. He was a strong, active, capable Air Force officer beforehand ..... and well, he still is, just not the strong and active part. On his worst days, he doesn't get out of bed or off the sofa ... thankfully, those days aren't many and he's been able to continue working for the majority of time. But he has taken pain medication daily for three years and no one can tell us why his head hurts so bad, or offer any kind of solution besides more pain meds. He's tired of taking them. I'm tired of watching him take them. Even the pain-management specialist they sent him to said he was "out of her league" ... which isn't a distinction one really wants to have, ha!
Last fall, we knew our daughter was coming up on the end of her treatment, he was planning what we thought would be his final reconstructive surgery, and we really, truly thought we could see light at the end of the tunnel. I embarked on a surrogacy journey, and am now eight and a half months pregnant, and unable to be with my husband for his radiation treatments until after I deliver. Once again, that light turned out to be the headlamp on a train, headed right for us.
Wow, did this turn out to be a novel, or what?
Sorry to have rambled on so long ... maybe I needed to get that off my chest more than I realized. It would help if I had someONE or someTHING to be annoyed with, but I don't. Just a streak of bad luck and bad timing that I am more than ready to see end for our family. If anyone had told me three years ago, when he was first dx, that we would still be in the thick of things today, I wouldn't have believed it. Now, I wonder about where we will be three years from now, and if things will be over, or if (heaven forbid!) we'll be no better off.
Anyone have a crystal ball I can borrow????
Thanks for listening, especially if you made it to the end of this obnoxiously-long post,
Kristie
