Monday, May 13, 2013

Being Home Really is Great...

I'll reiterate that, being home is really fabulous. There's not much sleep to be had in a hospital, so I always leave feeling like a zombie. The first day home, I'm usually so happy to be home that I'm a little perky, but fall asleep at the drop of a hat. Then the next day I just sleep and by the third day I am feeling more like a person again. So that gives you an idea of how the last few days have gone for me.

Mother's day was just another day. I was just glad to be home and sleep, get hugs from Jarred and sleep some more. Of course, all the sleep means I don't go to sleep when I need to, so I was up until about 4am.

But today I was up at least before noon. I've been resting on the couch since then. I've had a couple of juices; grapefruit and carrot-lemonade and now I think I'll have a sandwich. Rachel and Jarred went to the beach. It would have been nice to go too, but I just don't have the energy to get myself out there.

I was hoping to do a lot of fun, memorable things with Rachel while she visited, but right now, I just have to remember that being home is good enough for me. I did really want to take her to Seaside. It's just so nice and lovely out there. Walk around, see the sights, have a good meal and come home. I'm hoping that tomorrow I wake up with more energy and that is something we can do. I'll just drag my wheelchair out of the shed and use that. I'm hoping anyway. She leaves on Wednesday and it would be nice to do one fun thing while she is here.

It looks like I will be starting treatment on Thursday. I have an appt with the Dr at 10:00am then I am scheduled for treatment right after that. I will be so glad to get it underway!

The UPS man just delivered the fermented cod liver oil and gallon of coconut oil I ordered! I also need to bottle my kombucha today. This will be round two. I am hoping that I do a better job with the flavoring this time.

That's all! Thanks for your prayers! <3

Saturday, May 11, 2013

Part 4 Continued... This is realy personal and kinda gross so you may not want to read it all!

So, I got admitted TO the hospital on the 9th. Again. This time it was because I had been on my cycle for 20 days. Yes, I said 20! It was very bad and very concerning. I was passing very large blood clots, one as large as a softball.

For someone that keeps having to GET blood this was just no good at all and so they had to call in my OBGYN - the best ever, Dr. Hood - to see what the next step was. We needed to STOP the bleeding so we could move on with treating the MDS, etc. She immediately offered to do a uterine ablation to stop the bleeding. See, platelets clot blood. If you are very low on platelets then your blood just doesn't clot. So that was the issue. My cycle had gotten steadily worse over the past few months in terms of flow, but this is the first time it went as long and I was passing the large clots. I was just getting weaker, and weaker!

They went ahead and scheduled to do this yesterday morning, the 10th, and kept me in the hospital again over night to keep me on bed rest. Today I am spotting lightly. I ran a fever last night, but the Dr. has come in here and spoken with me and he now feels comfortable with me going home. I am very glad to head back to my comfy home. I didn't sleep much last night, but between the hours of 4am-9am I slept a bit.

My verse, the one that I just have to hold onto and KEEP repeating to myself is Psalm 61:2 "From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I.

I have sure been overwhelmed, but I know that God has me in his hand. I know he is solving these issues one by one in His timing not in mine. Which is the aggravating thing, cause I'm sure not so patient. You would think after three years of all of this i would have learned some... not so much! LOL

The good things about being in here right now:
  • My sister is in town right now and although this surely isn't the vacation we had planned she is a major blessing when I need her
  • I've had my favorite and best nurse during the day time the last two days, but truly, all of the nurses here rock and their level of service is so high. 
  • Going home is exciting even IF we aren't gonna do much! Just being home is GREEEAAT!
  • Tomorrow is mother's day and maybe I can go to church? It would be nice to go to at least one service.
  • There are so many people that love me. I don't know why. Lord know's I'm a pain, but I am thankful so much for the blanket of love he spreads around me!
  • I'm still very thankful that this has not developed any further. 
  • I'm also thankful that there is a lot of fruit and stuff in  my fridge so I can juice when I get home! I've been crazing stuff to drink more than eat, so I'm glad I have that to look forward to!

So right now I am going to get a bolus of some fluid to hydrate me real good, premeds (steriods & tylenol) and then the platelets then I can dressed and go home! In a about an hour or two at the most, I hope.

I'm hoping to rent a good movie tonight and celebrate Mother's Day early. Call all my Mom's and tell them I love them. Julie, Arlene, Angel, Gma, Bev, Mrs. Shirley! I love you all so much!!

Signing out for today and now we are ALL caught up! (as much as my memory can remember!LOL)

Love you all and thanks again and again for the many prayers!

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....

Thursday, May 9, 2013

What's Been Going On Pt 2...

I left off with my discharge from the hospital on 4/24/13. I came home that day and was so very excited to be back in my own house. There truly is no place like home!

Unfortunately, I just felt weaker than ever. I spent a lot of time on my couch or in bed resting and not understanding why I wasn't feeling better yet. See, before with the MDS, I never felt that bad. The temps subsided for the most part, which was very good, but I was still weak and just couldn't muster up the energy to do much. It's hard as a single mom, especially now that we are homeschooling when I get sick like this. I started to get really down about that as well, but then my HS/CM mentor sent me an email filled with so much grace and encouragement! Yes, moms, we need to not only encourage each other in the raising of our kids, but it is so important to encourage our mom friends. You never know just how much the simplest bit of encouragement or kindness will lift a person out of a pit and give them the strength to keep on keeping on! My sweet CM Momma reminded me that we ARE accomplishing the most important things; J and I are spending ample amounts of time together, his work IS getting done - he is even ahead in some subjects, but the ones that he is behind in we will catch up and that is not the end of the world. This is our first year homeschooling, we're using a completely different method than either of us are used to and, no, it is not easy, but we are getting it done, learning a lot in the process and most importantly I'm getting to know J better than ever!

When thinking of my sweet HS/CM friend, I am reminded of this verse: "A word fitly spoken is like apples of gold in pictures of silver." Proverbs 25:11

I would very much like to be a better encourager and am praying for the Lord to help me get my eyes off of myself and my situation and look more into others I come across, whether it be in the hospital, a waiting room, the lab office, the ER, my nurses, Dr's, etc. I think that it is high time that I get back to sharing the miracles He has already performed in my life and trials, in the valley's I've been in and how He has taken me to the mountain top again and again.

Just being from the home those first few days after a 7 day hospital stay there were so many things I was thankful for:
  • To have so many family, friends, strangers, and churches from far away praying for me. So many that I don't even know. Without these prayers I doubt that I would be able to share such good news with you in the coming posts! James 5:16 "Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much."
  • There were so many people that took time to visit me in the hospital. I am afraid to list them here for fear that I will miss one, but it was so sweet and kind for each and every one of you to take time out of your already busy lives and come sit with me. I love you all and I thank God for each of you! Phil 1:3 " I thank my God upon every remembrance of you"
  • I'm so loved. My heavenly Father loves me so and I see it in the outpouring of his saints. Over and over again and it is something that never ceases to take my breathe away. 
  • I'm thankful for each and every night I get to pillow my head on my own bed and each and every morning I get to wake up in my own home! There's no place like home!!
  • J doesn't open up much about how he feels about my health issues. He is a strong boy. I pray that in-spite of myself and what this chronic illness does to us and the instability that it brings our life that J will still feel stable, safe and the peace only Jesus can bring. I am always honest with him as to what is going on with me and what the Dr says. As we recently had a conversation regarding those very things I asked him how he felt and he said "I'm used to you being sick." That about broke my heart, that growing up with a mom that is chronically ill is his norm. This seems like a strange thing to count as gratitude, but I am thankful for the relationship we have. I am thankful that even though the last 3 years have been so rough, I have seen character traits develop in him that I don't know would have surfaced so soon otherwise, if at all. He has compassion, patience and understanding that exceeds that in adults I know. I pray that those traits in him continue to develop and that many more will show through. As hard as it is to go through the fire, I can see with my own eyes where it has refined him for good. The best part, is that he hasn't lost his smile or his need to constantly joke around. He is a very happy, silly and funny boy. I am so grateful that part of him will always be! Prov 17:22a "A merry heart doeth good like a medicine"
This brings us up to about April 28th.... Stay tuned for part 3

Wednesday, May 8, 2013

What's been going on...

In the last few months my health unfortunately took a turn for the worse. In my last post my counts were good and I was sure I was done with MDS and would be healthy all year. Things change quickly and the Lord has plans that aren't our plans.

In the end of February I had labwork done and it was determined that the MDS was back. At that time my local oncologist wanted to speak with a specialist I had visited with in June of 2012 to see what type of treatment was recommended. It took a month for him to finally get ahold of the specialist and by this time we were into late March and looking at dates to start treatment. We were supposed to start on April 15th - see, there are worse things than tax day! LOL -, but the weekend before I ran high temps all weekend, so when I went in on that Monday to see the Dr before I started back on the chemo he prescribed me some antibiotics and said we would start on Wednesday. 

I went in on Wednesday and still had a low temp, but they went ahead and started the treatment. That night I ran a very high temp and was up most of the night. I finally called my dr around 6:30am to let him know what was up and he told me to go to the ER. They admitted me that day, 4/18, and I stayed through 4/24. In the time I was there I had constant high temps and they couldn't find the source. I also had a lot of visitors, even a friend, April, that came from Biloxi and stayed the weekend with me. So the time passed quickly and I am very grateful for each and every person that came by!

Like I said, they never really nailed down if there was an infection and if so where while I was there. I've had a new port for about a year and it has always given me many problems. In the hospital they determined that there was a kink in it and wondered if that may be the source of the infection, so they planned to remove it.

On Wednesday, the 24th, the gave me platelets that morning, took me down to remove the port then discharged me that day, still not knowing where the infection was or if it was, or really any answers at all.