Milestones, Setbacks, and Comebacks — Case Cured

Hi everyone! I know I'm in trouble with many of you since it's been awhile (two months!) since I last posted. I honestly just needed a break from all things cancer-related. Except for some quick local blood draws to check my counts and an early August visit to my physician at the James in Columbus, I've been relatively successful in my endeavor to escape.

Otherwise, I've kept busy adjusting to my new "normal" as I continue to recover from treatment. I've spent my time clearing out the clutter in our house, addressing major plumbing issues (that's what happens when you don't live at home for seven months and your house was built in 1925!), and visiting with friends, family, and co-workers.

(Note to local folks--I am MORE than happy to have visitors or meet for coffee or food somewhere that's not heavily populated so long as you aren't sick. Having a bone marrow transplant was an incredibly isolating experience and made me that much more eager to see many of you again).

The past two months also brought many milestones that I was unsure I'd ever reach:

I co-hosted and attended my sister's baby shower.

I met my college roommate's new baby girl, Hannah.

We visited our friends Justin and Donata in southern Indiana to meet their baby boy Sam, and were able to swim in their pool since I'm port-free (yay!).

John and I celebrated our 9th wedding anniversary.

I met my new nephew, Jackson (isn't he the cutest!?).

I celebrated the healthy arrival of my dear friend Liz's first born, Teddy.

I met my step-sister Cassidy's sweet baby boy, Rizor.

Otherwise, we spent the summer watching Caroline have fun and blossom into a (mostly) sweet little toddler.

By mid-August, Caroline was off to her first day in the Itsy Bitsy class at her new preschool.

She looks so big in this photo, and looked the same way that day. I held it together taking her into her classroom but teared up when we went back to the car. It was only slightly difficult for Mama to leave her with a non-family member all day for the first time. She seems to like it so far, though, and I'm happy she's there and playing with other young kids.

One drawback to reaching milestones like these is that I often have to wear a mask if someone seems sick or the event is well attended. I of course masked up before walking into the preschool to avoid the kid germs, which bought me a few stares and glares from parents and grandparents. I know they probably thought I need a mask to avoid spreading illness to others, and questioned why I would expose young children to an illness (I would've thought the same thing pre-cancer). In reality, the mask protects me and my still very weak system from other people's germs.

Unfortunately, I recently found out the hard way that, despite my best efforts, sometimes even brief exposure to illness will land me right back in the hospital. On August 24th, after the first week and a half of daycare, Caroline picked up a stomach bug and vomited off and on for about 24 hours. This is the child who has only ever had one ear infection and was otherwise healthy during the first 18 months of her life. We expected she would get sick a few times this year, just not so soon. C'est la vie.

Worried I might catch the bug too, we took extra precautions. We sent Caroline to Grandma's and Papa's house, had cleaning services at our house, wiped down everything she touched, washed sheets, and sprayed Lysol everywhere.

Despite those efforts, at about 2 a.m. on Saturday, August 26th, I woke up vomiting and ran to the bathroom every 20 or 30 minutes thereafter. At first I suspected food poisoning because my symptoms were much more severe than Caroline's. After about four hours, when things didn't settle down, John called the bone marrow transplant line at the James to get advice. I was so weak at that point that there was no way I would've made it through the three and a half hour trip to Columbus for treatment. So, they instructed us to go to a local ER.

I was so ill John had to help me dress and I barely made it to the car. Once we arrived at the ER, I was given a wheelchair and was promptly shown to a room and given IV fluids and antibiotics. After they stabilized my high pulse and blood pressure, the ER staff completed a CBC (blood draw) and CAT scan of my stomach to try and discover the cause of my illness.

In the meantime, my oncologist in Columbus and the ER physician communicated about next steps. Together, they decided I would travel to Columbus via ambulance and be admitted to the bone marrow transplant floor at the James for further observation and treatment.

I've never been in an ambulance before, but riding in one strapped down to a bed for almost four hours was quite an experience. Thankfully the paramedic and EMT were friendly and kept my spirits up, especially since I arrived at the hospital alone (John followed later in his car; Grandma and Papa took Caroline because we thought it would be a short stay).

By Saturday evening, I was feeling incredibly worn out but no longer vomiting. I briefly spiked a 102.8 fever (probably from dehydration). Although I know the rule is generally no discharge within 24 hours of a fever, come Sunday morning I was as stubborn as ever (imagine that!) and argued with the on-service physician about being discharged. He refused to let me go that day, and told me they would likely keep me at least until the following afternoon (Monday).

I ended up throwing up one more time Sunday evening, so they kept me overnight again on Monday. The on-service doc also ordered a colonoscopy for Tuesday morning to check for graft vs. host disease (GVHD) and cytomegalovirus (CMV) in the gut. He promised that so long as nothing concerning showed up in the initial visual results, I would be discharged Tuesday afternoon.

Whatever made me sick had other plans. Over the course of three days, my white blood cell, hemoglobin, platelet, and neutrophil counts tanked. By Tuesday the 29th they were incredibly low:

To give you an idea of just how low those numbers are, my highest numbers since transplant were: WBC - 5.37; HGB - 11.2; Platelets - 171; Neutrophils - 4.62. Although these numbers tend to jump around a bit, the numbers on the 29th were a bit concerning. My neutrophils needed to be .5 or higher before I could be released from the hospital right after my transplant. I was also under stricter precautions after transplant until my WBC reached 1.5.

The on-service physician who interpreted these numbers is relatively new to Ohio State, inexperienced compared to my regular oncologist, and in just a year or two garnered a reputation among hospital staff for his poor beside manner (and poor manners in general, for that matter). True to form, he delivered a devastating blow to us last Tuesday when telling us he would not allow me to leave because of these numbers.

He knew that Caroline was sick just two days before me (I told him this repeatedly, and shared that my father-in-law got sick a day after me and exhibited the same symptoms). Nevertheless, he marched in to my room on the 29th and proceeded to tell me that the tanking counts were caused by one of the following: graft failure; relapse; graft vs. host disease (for which I'm currently taking prednisone); or a virus. He did not hesitate to emphasize his concerns about graft failure and relapse, intimating that it was really one of those two possibilities causing the low counts. Those are also the two possibilities of the four that require additional chemo/radiation and a second transplant.

When I asked what we would do to treat each scenario, he flat out refused to tell me and said he "wouldn't discuss it." That attitude, on top of receiving devastating news and already being in the hospital for days longer than expected, really set me off. It's so unfortunate that he behaved in that manner, because I've had nothing but stellar care from every other staff member at the James (a few of the main hospital employees are another story for another day).

Not taking no for an answer, I had my nurse contact my regular oncologist (who monitored my numbers all week and visited me once even though she wasn't on service). My oncologist got back to me within an hour on my cell phone, and I asked her what we would do if it was graft failure or relapse. She swiftly responded that those phrases should not have been uttered at all, by anyone, until every other possible cause had been ruled out. She said those phrases are very serious and would require us to start all over again, and not to go there unless and until we needed to.

My doctor also assured me she saw no reason based on her earlier visit to suspect the cancer was back. She said it was likely either GVHD or a virus that caused my counts to drop. She reminded me my counts did the same thing to a lesser extent in May when we were treating two viruses--CMV and EBV. It was such a breath of fresh air talking to her. After being under her care for nine months, I truly understand why staff at the James rave about her.

In the meantime, I had yet another bone marrow biopsy. I am so used to the procedure by now that the nurse said it was the easiest bone marrow biopsy she's ever done. I doubt they give out an award for that, but maybe they'll give me a cookie at some point.

I was also given a shot of neupogen, which is supposed to temporarily prompt the bone marrow to generate white blood cells and neutrophils.

Then, we waited. And while we waited, John drove back to Louisville to get Caroline because we were really missing her after several days away. Her visits to the lobby of the BMT floor last Wednesday and Thursday were a most welcome distraction (kids under 12 are not allowed in patient rooms on that floor).

Ultimately, the CBC test showed that my platelets and hemoglobin had marginally increased on their own. I also reacted nicely to the neupogen shot and my white blood cell and neutrophil counts improved significantly. The on-service doc seemed surprised when he heard the numbers, and said they suggested the low counts were not caused by graft failure. He still hedged and said we couldn't rule failure out until we saw how my counts progressed, but that he now suspected GVHD as the culprit.

By Thursday morning, my counts were relatively stable, and we learned the colonoscopy was negative for CMV and GVHD. As a result, they released me from the hospital late last Thursday and scheduled a follow up appointment for Tuesday September 5th to draw blood and review the remaining test results. Pending tests included the bone marrow biopsy, which shows relapse, and several viral panels. Thankfully, we had already planned a Labor Day visit to Columbus, so we stayed for the weekend. For the most part, we were able to enjoy ourselves and ignore the cloud hanging over our heads.

Like clockwork, though, the anxiety kicked in yesterday as we returned to the James and waited our turn to get results in the hematology clinic. For once, things didn't end like a Russian novel and we received all positive news! My counts continue to improve--WBC was 1.95, Hemoglobin was 11.2, Platelets were 107, and Neutrophils were .74. I will have blood work done again early next week in Louisville to monitor my progress.

What's more, all of the viral panels came back negative. But, the best news of the day was that my bone marrow biopsy showed no evidence of disease! I'm still in remission, and we finally got to come home last night a week and a half after the whole crazy ordeal.

I'm always looking for a silver lining in my cancer journey. I think the one thing this recent experience taught me is that, although I may look healthy on the outside, my immune system is still incredibly fragile. It's a good reminder to me to continue to mind my p's and q's as we enter cold and flu season, and I'm hoping this might prompt some of you to stay home (or keep your kids home from school) when sick to avoid harming others.

Otherwise, I want to mention that September is blood cancer awareness month. Blood cancer can be incredibly technical and complicated to explain, but you can expect some simple educational posts from me this month. And if you're interested in helping us find a cure, please consider donating to:

- The Leukemia and Lymphoma Society - invested in the research that made my pre-transplant immunotherapy available via clinical trial;

-Be The Match - coordinated and found the gift of life given to me--a bone marrow donation from my donor;

-The Red Cross (or any other blood bank) - collected product for the multiple platelet and blood transfusions I received in the weeks following transplant.

Stay tuned, more posts to follow soon.

With love,

Rebecca