When we last left off, Susie had a blood transfusion right before New Years day and we had stopped chemotherapy. Her platelet counts were very low and they were raised above 50k from the transfusion. After New Years day her platelet counts started to drop again. We went through the weekend sitting on pins and needles, not to mention Susie was not herself. She had no energy whatsoever, she could barely go up the stairs to bed, nor could she sit and visit for more than a few minutes. Her speech was changing, as she was so tired. We knew her platelets had dropped, but we were not seeing any bleeding (outside of the red dots on her skin, known as Petechiae). So, we had a feeling that Monday would be the beginning of a roller-coaster ride, boy were we right.
While Susie was completely wiped out on Monday, we still went about our business as normal as could be. Normal means going to radiation and getting a blood test in the morning. Before we got home, we had a phone call from the nurse stating that Susie’s platelets were at 10k and that she needed to rush over to Seton and get a platelet transfusion as soon as possible. She also went through all the warning elements to keep a watch out for. As we had done a transfusion the week before, we knew the routine at Seton Hospital. We were given the room (704) next to our old room (703). Susie’s nurse was nice man named Marcus. She explained about how her veins are uncooperative and that Lisa (a head nurse) was pulled in last week to save the day. He smiled and said he would get it in one try, and he did. We enjoyed visiting with him, and Lisa popped in to say hi. We figured after the transfusion, like last week, that Susie’s counts would hop above 50k. As we left, we said ‘Thank you very much, We really liked the service, but we hope to not see them again’.
Boy were we surprised when we got the Tuesday morning CBC results and found out that Susie’s platelets had fallen even further to 5k. Devastated is probably a good description of the feeling going through our bodies at the news. I had read about people experiencing spontaneous/ wet bleeding with their platelets around 5k. So, Susie was sent immediately back to Seton and given another transfusion. She had a new room and a new nurse (Tabitha) who brought in Lisa to do Susie’s IV. Susie had great rapport with Tabitha. This time as we left, we purposely did not say our funny good bye comment. We crossed our fingers that the transfusion would take, but Susie still felt fatigued the next morning. So, we went in before the scheduled radiation and did her blood test. We waited for the result and learned that it had increased ever so slightly to 6k. So we were still in the danger zone, as clearly transfusions were not rectifying the situation. So, we did a huddle with the medical team and decided to:
- Cancel radiation until the blood counts issue was resolved
- Pull in a Hematology-Oncologist
- Get another platelet transfusion hoping it would protect Susie for the rest of that day (we had Tabitha as our nurse again, Susie says she has the sweetest smile 🙂
The Hematology-Oncologist (Dr. Richard Helmer) was recommended, but he was unavailable on Wednesday. We were able to get on his schedule for Thursday morning. His nurse called me Wednesday evening and briefed us that Susie was likely going to need a bone marrow aspiration and biopsy and how to prepare for it. We met with her and Dr. Helmer Thursday morning. He reviewed her blood test results, fifteen years of treatment history and explained what the possibilities and likely findings would be. Her platelets had risen to 7k, so progress was very very very slow. He was very straightforward with a strong Texas accent. Susie really liked him and his nurse (Laura), especially because they were familiar with Callahan’s General Store and her family elements related to Austin and Bastrop County.
Susie was taken into a different room for the bone marrow aspiration and biopsy. Dr. Groves’ Physician Assistant, Rachel Smith, was with Susie for the procedure. She held Susie’s hand and was just terrific. They even brought smiles to Susie’s face with a slightly off colored joke that an old lady told them who they had performed the same procedure on. The joke was was quite good, but not appropriate for me to print in black and white. Susie was superwoman during the procedure. After the procedure, she had to sit with pressure against the operation area. She probably sat in the same place for a couple of hours, waiting for the bleeding to stop. Eventually the bleeding stopped and the area was bandaged. We would not get the initial results until Friday. In the meantime, Dr. Helmer said that he did not want Susie to have another transfusion. We should only get a transfusion if we start to see bleeding (i.e. orifices, urine, stool…) and that he was prescribing an inhibitor (Aminocaproic Acid) that should reduce such an occurrence. The nurse called our local pharmacy to see if they had it on hand, which they didn’t. She called the specialty pharmacy that we get the chemo from, but they did not have it either. So, she sent us on our way and would call us when she found a pharmacy that had the drug. Two or so hours must have past, and she called me. She must have gone through 20 pharmacies, but she found one in South Austin. When I went to pickup the prescription, I was curious to find out the cost of it, as the drug seemed quite rare and no one stocked it. Well the prescription without insurance was $392 for a ten day supply, with insurance it was $22.
Friday morning comes around and we received a call from Laura (Dr. Helmer’s nurse). She said the initial results from the biopsy would be in after lunch, so our appointment was rescheduled for 2:45 PM. It was quite strange to remain home for the morning. Susie looked at me and was like ‘What do I do?’. My response was, ‘Rest, relax, watch a movie, just don’t pickup any sharp knives, whether you want to juggle them or throw them at me’. This also gave me some time to catch up on some work, at least when there is daylight and I have colleagues in nearby time zones working.
When we went in for her appointment, we learned that Susie’s platelet count had risen to 8k. So, we are going in the right direction, just very very very small baby steps. Dr. Helmer had the results of the biopsy. In short, what he discovered is that the amount of megakaryocytes in her bone marrow is very low. These are the bone marrow cells responsible for producing platelets. So, this confirmed that Susie’s body was not consuming/ destroying platelets at a high rate, but that production was impaired. He said that this type of behavior maybe a side effect from one of the Clinical Trial Chemo Drugs (specifically BCNU) that she took 14 years ago. It is amazing how we learn things as time passes. It sounds like her body is handicapped in the platelet producing factory and her current chemo, Temodar caused a strike with the few cells she has. So, her response/recovery is significantly slower as compared to patients that have not had such prior treatment. Nevertheless, he wants to give Susie the weekend to see how much her body will recover. If the recovery is insignificant, then she will likely go through a regiment of corticosteroid injections. If we still do not see progress, then there are some other treatment options (namely immunoglobulin/ IVIG and polyclonal anti-D) in his back pocket. Taking out the spleen, which filters the body of platelets, is not really a consideration.
So, as you can see this last week was quite a roller-coaster. I don’t know how we made it through the week, but we could not have done so without the support of friends and family. There are so many people that provided moral support and voiced readiness at a drop of a hat to be a blood donor, especially if more than just platelets was needed. Some actions that stood out during the week included:
- Mary and Dave from across the street bringing over pie from Royer’s Pie Haven. She brought my favorite, blueberry w/ cream cheese and also a cherry pie. Thank goodness she did not leave both, but a half a pie of each. I had pie for dessert and breakfast.
- Leora, Susie’s mom, came to hold Susie’s hand during transfusions and watch her sleep. She also brought us dinner Sunday night.
- Speaking of meals, we had a plethora from multiple people this week, namely Nancy Joe from UMA, our sister-in-law Yvonne (homemade enchiladas that we pulled from the freezer), our neighbor Dörte and our friends Todd and Han.
- Folks going to donate blood so it was banked when we or others need it, specifically Ken and Laura.
As you can imagine, we have enough food to feed a small army or us well into next week. So, while the week was topsy turvy, we are closing it feeling loved, supported and happy that we have a game plan moving forward. Whether we start radiation or chemo in the near future or weeks later or not at all, we know we are focusing on what is important right now.