Saturday, May 11, 2013

What's Been Going on Part 3...

At this point in time, around the end of April, I had been home from the hospital for several days, but I was still feeling extremely fatigued and spending most of my time resting. J was supposed to have a piano recital on 4/28 and he had practiced really hard to get ready, but I just was not able to take him. Concerned that this was a big deal to him I asked "So, J, how important is it that you go to today's recital?" J, shoulder shrug "Well, I really want to go because I memorized 11 pieces and she is going to give me a huge chocolate bar!" LOL! My sugar boy!! As you can imagine, that dissipated any guilt I had about not being able to make it! I basically said, "I'll give you some chocolate and you can play some impromptu performances when we have company or when we are around a nice piano!" Problem solved!

As May approached I was still tired, and also running the occasional temp, which we still had not nailed down the source of these. Remember that they thought it may have been the port. So when they took the port out, the ran cultures on it to see if that was the culprit. This port was not healing the way it should have. That was a very minor procedure to remove it, yet it was bleeding a lot. I had an appt with my Dr on May 2nd to find out what was next. That week I was in the ER on Monday due to being so weak and at the urging of my Dr. I needed more blood/platelets and rather than having me wait a long time they sent me home and I came back the next day, Tuesday, to IV Therapy to get the transfusions I needed. May 1st, Wednesday, was a nice day at home. We didn't have to leave the house one time and it was so lovely to just BE. That night when I started getting ready for bed, I went ahead and changed to dressing on my chest. I needed to do that 1-2 times a day depending on how much it bled. Let me just tell you now, I could never be a nurse or surgeon! I don't deal with the bloody stuff very well. When I took the bandage off, one of the steristrips that they put on there came off with it. The center one. I guess what they did was internal stitches, then slapped some glue on top of the incision then put three steristrips on. Those should stay on for a couple of weeks and by the time they fall off the wound is usually healed. Well, when I took my bandage off the middle steristrip came off with it. Then I noticed a small hole to the left of that area that was oozing blood. Like I said, I am so not good with blood. It was so gross. I mean really, it probably wasn't as bad as I thought it was, I just got the heebeegeebees and it bugged me all night long. All I could think was that open wound is so close to my heart and it was bleeding and that's all it took for me not to get one wink of sleep! LOL. Like I said... No future nurse or Dr here!!!

Side note: Last year when we discovered I had the MDS I would get transfusions about every two weeks or as needed. Platelets last about 7-9 days before they expire and would normally regenerate in your own body; however, mine weren't producing them at all at this point in 2013. I seemed to notice needing A LOT more transfusions this time around which is something that was worrisome. I mentioned to Dr. Johnson that I was a bit concerned that my MDS may be progressing into AML earlier in the week. When I had the seven day stay in the hospital I think I received somewhere between 4-5 bags of platelets in a 7 day stay.

I was up that entire night worrying over my port, lol. I had an appt with Dr. Johnson the next day, May 3rd, and this would be the first time I had sat down and talked with him since before I spent those 7 days in the hospital. At this point I was really looking forward to getting some answers. Anytime you see the Dr at my oncology clinic they always have you come an hour early to draw labs. It takes about an hour to get them back then you can go ahead and see the Dr. Once I got into the room with the Dr and we caught up on our chit chat he expressed that he was also concerned that the MDS may have progressed further along into AML (Acute-Myleoid Leukemia). My blood and platelets were also very low - AGAIN - so he wanted to do a transfusion. My chest was still bleeding a lot from where the port was removed so he also wanted address that. He felt the best way to do all of this would be to admit me in the hospital overnight. The plan was that I would get the blood through the night, platelets in the morning and then have the bone marrow biopsy and my former port sight taken a look at - and hopefully fixed??

Admittedly whenever we talk about AML & me I panic. My mom was diagnosed with AML when I was 5 1/2 months pregnant with J. I believe she was about 41 at the time. I watched her go through the bone marrow transplant that didn't work, watched her get sicker, sicker, and sicker. Watched the weight fall off of her. I was there when we brought her home from the hospital and spent several days by her bedside, holding her hand, staring in her eyes and watching her die. It was one of the most difficult things that I've ever experience. It was a traumatic event. So.... You can maybe understand why I get panicky when we talk of AML and me. When I think about losing my mom this way now, I always picture myself going through that while J stands by idly, helpless and hurting. Wishing his mother could hang on, wishing things had been different, wishing there were hope for a relationship in the future. And when I think these things, it tears me apart.

Maybe that explains why I am in a near panic when the talk of my disease nears AML. I've been there with her and seen how ugly it is. I don't want may family to have to go there.

At any rate, over to the hospital I went and they checked me in and every bit of this was accomplished and I got to go home that Friday night.

J was waiting at home for me when I got there. We did a lot of relaxing that weekend and even had our very first homegrown strawberries!

I was still a bit week over the weekend. I started my cycle on the 22nd of April and we were know entering into the first week of May without it letting up one bit. The next week I would spend fighting that battle and trying to figure out what to do about it.

Monday, 6th I had lab work done, which required me to have blood and platelets on Tuesday. By that time though my cycle had gotten so much worse and I was on day #16. Along with the length of my cycle I was passing continuous large and heavy clots. I will save you all the gross detail and leave it at that. This became more than a persistent problem throughout the week as it was also making me even more weaker than I already was.

My sweet sister came over from college on Wednesday and is to stay for a week. All year we've been planning to spend this sweet time together and although I am disappointed I am not well, it is still a blessing to have her here. She is getting some good time in with her nephew!

I was scheduled to see Dr. Johnson again on Thursday, the 9th, to get the results of my biopsy. The day of the appt I was told to go directly to the ER rather than the appt because of the heavy bleeding that I was experiencing. I ran into Dr J out in the parking lot of ER. I was concerned that since I was going to the ER to address this other issue it may be a while before I found out about my biopsy results and quite honestly I was very eager scared anticipated anxious. Well in speaking briefly with him in the parking lot among other things he was kind enough to tell me that my bone marrow did not look much different than the previous time; ie. NO AML!!!! PRAISE THE LORD!!!! I KNOW this is an answer straight from the Lord.

I'm still in the hospital though, so I'm gonna continue this to a part 4....

1 comment:

  1. Seeing this all written down, and reading it in one lump, it emphasizes how much you have been through and still persevere. We wish you did not have to go through all this. We wonder what God's plan is through all this. We pray for strength for you and Jared and the rest of your family to get through all this.
    Wade and LeeAnne