[mymomismyhero]

All,
I came acrossed this site this morning and after reading many threads, I decided to registered for an account. My mom (my hero) is a 2-time breast cancer survivor; right breast 8 years ago and left breast 4 years ago. She had a lumpectomy both times and lymphnodes were removed from her left arm. She underwent chemo/radiation her first time around and only chemo last time. Up until late last summer she generally had a clean bill of health.

Throughout the summer she had been losing weight real fast and was super proud but wasn't trying to lose weight. At the beginning of 2012, she weighed 182 pounds and by the time she ended up in the hospital (2nd time), she weighed only 117 pounds. She had went to her family doctor for a check-up and post-exam, her doctor sent her straight to the hospital for a blood transfusion because she was severely anemic.

During her first two trips they were trying to figure out what was really going on. Anyhow, after her first trip they deduced it to an infection in her esophagus called H-Pylori--I was so relieved that's all it was. However, her blood counts continued to decline and she needed more and more transfusions/platelets. I think it was during her 2nd hospital stay they did the bone marrow test and discovered she had MDS. Which, as you all know is probably attributed to her past chemo/radiation therapy.

She was released from the hospital and referred back to the same cancer center that treated her for the breast cancer. She underwent 4 of 6 rounds of chemo with the drug called Decitabine (Dacogen). Also, she received a shot every week (or other week) called Aranesp. Sometime in October she started getting very tired, short of breath, and bronchitis-like symptoms. She went to her family doctor and was diagnosed with bronchitis. One week later, during her follow-up she was then diagnosed with walking pheumonia.

I knew she was starting to feel really bad because my mom is very energetic, even at age 73. She was starting to stay at home, and stay in bed, more and more. Two days before Thanksgiving she went for another check-up and came home requiring oxygen to breathe. Not the little portable bottles, there wasn't enough output in those to keep her oxygen level above 90. Again, still practically bed ridden.

The Tuesday after Thanksgiving I called the cancer center and said I felt she needed to be seen and she was struggling even with the oxygen. They told me to tell her to go the ER immediately. When I called and told her this, she thanked me because she said I saved her the trouble of making that decision for herself.

After being in the hospital for well over a week, she was being seen by 5 different specialty doctors--but only one visit from her cancer doctor. The pulminary doctor told me that her chest X-ray revealed what could be cancer and that he did not feel comfortable doing a biopsy because of her unstable condition in regard to the lack of oxygen she was getting. I immediately started demanding she be transported to the Cleveland Clinic (CC) but it took me two days to get that far. Why? Because the cancer doctor felt she was fine where she was at and thought she was ready to go home. Really? This comes from the lady who had only been in there one time to check on her. I called doctors after hours only to be blown off. Come the next morning, the pulminary doctor walked in and after I told him the cancer doctor wouldn't sign off on her getting moved, he immediately got the ball rolling. Oh, BTW, she seriously needed a blood transufsion the night before but the cancer center failed to send over the signed order for the transfusion. I called the on-call doctor and all he said was, "she will just have to get it tomorrow.". I was so upset, especially cause he openly admitted she would feel better with the transufsion but there was nothing he could do about it. Thank god there were two nurses on duty that both signed for the order and she got her transfusion within a couple of hours.

I'm sorry this is such a long story. Finally, she gets transported to CC by a mobile intensive care unit ambulance and she was admitted to the Medical Intensive Care Unit. In less than 3 hours, her team of doctors came to the theory that her lung problems were atributed to the chemo durg, Dacogen. There theory was solidified two days later after she underwent a lung biopsy. They immediately put her on Prednisone and took her off almost everything our local hospital had put her on.

She was moved to a regular floor and stayed at CC about another week. Her blood levels started to come up and she was released to go home and follow up with the local cancer doctor. This is when she moved in to my house. She had a home physical therapist and visiting nurse for about two weeks and it took me a whole week after her being home to get the cancer center to order blood work from our house as she was in no shape to travel. It was during the week prior, though, that the cancer center doctor (without any records from CC) was ready to proceed with another type of drug for chemo. It just so happens, however, her numbers were looking so good that they opted to postpone any further treatment.

My mom began to eat again (due to the high dose of Prednisone) and has since put on 13 pounds. Two weeks ago (Saturday) she developed a nose bleed that wouldn't stop so I had to call 911. The local hospital finally got her nose to stop bleeding by packing it with something and injecting the packing with saline. They also gave her platelets that I knew were only at 10 the day before when she went to the cancer center for her blood work. They also gave her fluids via IV because she was dehydrated--I had no idea because she drinks a lot of fluids, especially water.

She was released again so I watched her like a hawk just praying she would be okay until her follow-up appointment with her pulminary doctor from CC on Monday. Sunday morning, she was walking back from the bathroom and became very light headed. I was trying to hold her up, but she was passing out on me and was unresponsive. I, again, called 911. When she got her wits about her again she was mad that I called them. Bless the EMTs because when I tried to cancel the call they insisted on coming anyway to take vitals. She stayed at home and I continued to watch her closely. Her blood pressure had been very low and she finally admitted she had been getting light headed for about 4 days.

Please see next thread for the rest of this story.

Thanks,
Sheri