What the Hell happened to you? Part 1

So it’s been about 2 months since you last heard from our heroine. I would like to tell you that I have been basking in the Boston sun, patiently awaiting my Bone Marrow Transplant. But that would be a lie, both about the sun (it is 41 and cloudy here) and the patiently waiting part. So let’s get you all caught up.

When you last heard from me, I was going home from rehab and had started chemo in preparation for the transplant. I did go home. For 3 days. Each night was plagued by rigors and fever and crying…. I had been having these things at the rehab facility, but they were getting worse. I had an appointment with Dr. Superwoman…. and low and behold she admitted me directly to the hospital. My blood pressure was 84/50, heart rate in the 100’s and continuous temp that spiked in the late evening. I was weak and nauseated amongst other problems. But chemo (Campath) continued, this was a really important chemo- and once you get the process started, you have to go forward with the bone marrow transplant. I would get a meager amount of Tylenol, which once again I had to argue for, Demerol for the rigors, otherwise it was just my tears and cries to God for help that were my treatment. They really didn’t know what was going on… again. But thank goodness for Dr. Superwoman- who had seen this ONCE before. I was reacting to the chemo. My labs were all up or down (they were whatever they should not be) it was driving the HLH into overdrive. We just had to wait it out. I completed the Campath…. the symptoms improved. But we were not done.

Campath kicked my butt. From what I understand, butt kicking is listed as a side effect of Campath and it’s not terribly uncommon, mine was just a little more than normal. I could not keep things down, I was weak and still feverish. Then one day right after I vomited, I had a massive amount of diarrhea. I had not made it to the bathroom (just when you think your dignity cannot be hurt any further by this awful disease), as the precious nurse was cleaning me up, she asked “have you ever had bleeding from the rectum?” Are you kidding? I have 3 kids including a set of twins- of course I had hemorrhoids. So we accepted it like that. Until about an hour later- it happened again. Only this time it was a frank amount of blood. And it happened again and again throughout that night. I’m still a nurse, so I know this is not good. I called Greg in the morning and told him he needed to come. I was stable, but just in case, I needed him around to make decisions for me if I could not answer. I was awake when he got there, but I am not sure how long that lasted. (Honestly, there are a lot of things that I don’t remember at all about the months of February and March. That is probably for the best). What I do know is that I was stable and concerned. Greg stayed with me through out Saturday and headed home that evening. I met with GI who planned a colonoscopy to take care of the bleed sometime Sunday. All of the rest of the story- I do not remember. Periodically, I will ask a question about that time and Greg will tell me what happened. But for someone who has had depression and who has faced a life threatening illness, I was closer to death than I had ever planned. Greg checked on me periodically through the night. At 5 a.m., everything looked OK. I was still bleeding, but stable. But at 7, the nurse called him, stating that, “she is stable now, but I am not sure how long that will last. I think that you should come in.” Nurses are angels. They will put you at ease when worry is not necessary, but when it IS time to worry, they won’t hide from you either. Greg came right in. I was bleeding continuously at this point. They were giving me blood as fast as they could and I was pooping it out just as fast. They would give me a unit of blood and check my counts, my counts would continue to go down after the infusion. This is not good. The chemo had flared my HLH, which is also characterized by coagulopathies (clotting problems), which was complicated by my blood thinner use for the DVT (clot in my leg). Many HLH patients die of massive GI bleed and organ failure. This is not good. The GI doctors talked with Greg- they were very concerned that the bleed was from more than one area, in which they would be able to do nothing for me. Let that settle with you for a few seconds.

Miracles do happen. I am here. I was given an angiogram which showed one bleed in my transverse colon. All I can think is that that one diverticuli must have been running like a garden hose. I was given an emergency colonoscopy, the site was clipped, and life continues. The doctors said they were fortunate to find the bleed since with that much blood in the colon, the source can be hard to identify. In all, I required 14 units of blood products over 24 hours, which is 1.5 times my bodies blood supply. I can tell you in the days following the bleed, I would wake up extremely disoriented. It was the worse disorientation ever, because it was so surreal. It just didn’t feel real. It would take a few minutes before things would start to come back to me. And then the pain and nausea would start.

Fortunately, I remember this just faintly now. I know that my nurses cried for me. They came and visited me as my journey in the hospital continued. My mind struggles to wrap this event up so that I can understand it. All I can accept is that I’m not supposed to understand right now, maybe ever. I can accept that. This is my Winter. Laying dormant. Not dead. Dormant. To the outside eye, it is sometimes hard to tell the difference. Babies do not know life in the womb. They rejoice in their life and receive the care of their parents. I now need to receive the care of my Holy Father. He didn’t do this to me, but He is with me through it. He is with me through it. (Thank you Pastor Chris). Believe. Trust, Listen.

My winter was not quite over.